Re: [TMIC] question about sexual function
This one is for the guys... In a message dated 1/25/2013 5:59:56 P.M. Eastern Standard Time, jeffsmokeea...@yahoo.com writes: serious question here, is it possible for a paraplegic to engage in sex and achieve ejaculation after 13 years without having done it,has anyone on here had this problem and what did they do to resolve it. jeff Tm 2000,Ms 2005
Re: [TMIC] question about sexual function
Jeff, I have had TM for 18+ years and yes I have this problem (and I am not paraplegic, just have nerve damage). When I have asked doctors about it they look give me a blank look, suggest Viagra and then talk about something else. I have never heard of something that will resolve it. Maybe someone else has better input (although this seems to be a sensitive subject that people tend to avoid). Roger in Kennewick, WA From: jeff bernier jeffsmokeea...@yahoo.com To: tmic-list@eskimo.com; msersl...@yahoogroups.com Sent: Friday, January 25, 2013 2:59 PM Subject: [TMIC] question about sexual function serious question here, is it possible for a paraplegic to engage in sex and achieve ejaculation after 13 years without having done it,has anyone on here had this problem and what did they do to resolve it. jeff Tm 2000,Ms 2005
RE: [TMIC] question - knee replacement
I know this is a very late reply, but for what it is worth . . . I had a partial knee replacement - Avon - on my right knee on March 26, 2009. It was the best thing I did! I had severe arthritis and bone on bone. So at 47 years of age, my doctor suggested the Avon partial replacement. Before my surgery I was very limited to what I could do. I was to minimize the amount of walking and avoid stairs. The only exercise I was permitted was swimming and golf if I took a cart. I was in constant pain. When I woke from surgery, my knee ached. But within a few hours after the surgery, I literally had no pain at all. The nurses would not believe me so I had to lie and tell them that my pain level was around 3 on a scale of 1 to 10. That seemed to make them happy and they would leave me alone and not try to force pain meds on me. My surgery was at 1:00 PM on Thursday and I spent the day in bed. On friday morning, they removed my catheter and I used the walker twice, once to get to washroom to wash up and the second time to actually use the washroom. After that I was on crutches. Because of the 14 surgeries I had on my right knee prior to the partial replacement, I had a great deal of scar tissue which hampered my mobility. I relied on my crutches for 10 weeks and then went to a cane for almost 4 weeks. I have full mobility and aside from a squeek I have absolutely no pain. Best thing I ever did. Margaret To: patticoole...@gmail.com; rp...@neillsupply.com; tmic-list@eskimo.com Subject: Re: [TMIC] question - knee replacement From: balmat...@aol.com Date: Wed, 8 Dec 2010 18:16:19 -0500 Hi Patti, I'm not sure if he is right or wrong, but my physical therapist told me that I probably have hypersensitivity. I am not sure if that had anything to do with the pain issue, but I don't think so. I think it's due to the fact that I don't walk well and that I wouldn't be able to do the rehab as well or in the same manner as somebody who is walking much better. I know that they keep you comfortable with pain meds, but I went through plenty with my shoulder, needing to put pressure on it just to be able to ambulate about a little. I still needed to get back and forth to the bathroom, on and off a toilet, etc and that's just the minimum. Wow, it seems like a double replacement is rather common. Although I cannot imagine doing 2 at once, it may be nice if you need to do them. to get the pain and rehab over with all at once. And.then on with your life! Hugs, Barbara A in Auburn CA -Original Message- From: Patricia Cooley patticoole...@gmail.com To: 'Barbara Alma' balmat...@aol.com; RPall rp...@neillsupply.com; tmic-list tmic-list@eskimo.com Sent: Wed, Dec 8, 2010 7:04 am Subject: RE: [TMIC] question Barbara my husband had double knee replacement in 2006. Whatever pain he had must not have been too bad as he didn’t complain. I think the one thing that made it easier for him is doing your pre-surgery exercised to strengthen leg muscles. A month before surgery he a given a 3-ring binder with all the excises listed. He did them faithfully all day so his body was ready for the demand surgery would put on his legs. In fact, he only went to P.T. for about 3-4 weeks, as they said they couldn’t do any more for him and Medicare wouldn’t pay for it any more. He was driving again in less than 4 weeks. Of course, he didn’t have any other health problems, which might make a big difference. Good luck with whatever you decide to do. Patti - Wisconsin From: Barbara Alma [mailto:balmat...@aol.com] Sent: Wednesday, December 08, 2010 2:04 AM To: rp...@neillsupply.com; tmic-list@eskimo.com Subject: Re: [TMIC] question Hi Rob, After having trouble with what I thought was my leg due to 2 DVT's and poor circulation, I found out that I am not totally bone on bone yet, but there is a lot of arthritis, which means I could get the replacement. I'm only 59, so figure if I can put it off for awhile, I will. As much as I walk, I'll probably never wear it out. I was actually on schedule for a knee replacement last year when I asked to see a physical therapist in order to best improve the strength in my body so I could get through the rehab in the best way possible. The therapist told me that the knee is no walk in the park. It is extremely painful, after the surgery, but especially the rehab. I don't understand what you mean about rehab differently. From what I understand, and I really didn't go into it all the way, you have exercises and walking. He told me that a very painful part is straightening the knee, as it will want to be bent to be in less pain, but not good since you develop scar tissue very quickly and if not careful, you will not be able to straighten it fully. I had a couple of visits and from the exercises that I was doing for my legs I no longer had the pain that I was having. At the time I
RE: [TMIC] question - knee replacement
I AM SO GLAD FOR YOU. A LITLE SQUEEK IS A GOOD EXCHANGE FOR ALL THE PAIN AND LACK OF MOBIIITY YOU HAD BEFORE. I KNOW MY HUSBAND'S DOUBLE KNEE REPLAEMENT IN 2006 WAS THE BEST THING HE COULD HAVE DONE. KEEP UP THE GOOD WORK AND LET US NOW HOW YOU CONTINUE TO DO. PATTI - WISCONSIN From: Maggie [mailto:magiema...@hotmail.com] Sent: Monday, January 10, 2011 2:00 PM To: balmat...@aol.com; patticoole...@gmail.com; rp...@neillsupply.com; tmic-list@eskimo.com Subject: RE: [TMIC] question - knee replacement I know this is a very late reply, but for what it is worth . . . I had a partial knee replacement - Avon - on my right knee on March 26, 2009. It was the best thing I did! I had severe arthritis and bone on bone. So at 47 years of age, my doctor suggested the Avon partial replacement. Before my surgery I was very limited to what I could do. I was to minimize the amount of walking and avoid stairs. The only exercise I was permitted was swimming and golf if I took a cart. I was in constant pain. When I woke from surgery, my knee ached. But within a few hours after the surgery, I literally had no pain at all. The nurses would not believe me so I had to lie and tell them that my pain level was around 3 on a scale of 1 to 10. That seemed to make them happy and they would leave me alone and not try to force pain meds on me. My surgery was at 1:00 PM on Thursday and I spent the day in bed. On friday morning, they removed my catheter and I used the walker twice, once to get to washroom to wash up and the second time to actually use the washroom. After that I was on crutches. Because of the 14 surgeries I had on my right knee prior to the partial replacement, I had a great deal of scar tissue which hampered my mobility. I relied on my crutches for 10 weeks and then went to a cane for almost 4 weeks. I have full mobility and aside from a squeek I have absolutely no pain. Best thing I ever did. Margaret _ To: patticoole...@gmail.com; rp...@neillsupply.com; tmic-list@eskimo.com Subject: Re: [TMIC] question - knee replacement From: balmat...@aol.com Date: Wed, 8 Dec 2010 18:16:19 -0500 Hi Patti, I'm not sure if he is right or wrong, but my physical therapist told me that I probably have hypersensitivity. I am not sure if that had anything to do with the pain issue, but I don't think so. I think it's due to the fact that I don't walk well and that I wouldn't be able to do the rehab as well or in the same manner as somebody who is walking much better. I know that they keep you comfortable with pain meds, but I went through plenty with my shoulder, needing to put pressure on it just to be able to ambulate about a little. I still needed to get back and forth to the bathroom, on and off a toilet, etc and that's just the minimum. Wow, it seems like a double replacement is rather common. Although I cannot imagine doing 2 at once, it may be nice if you need to do them. to get the pain and rehab over with all at once. And.then on with your life! Hugs, Barbara A in Auburn CA -Original Message- From: Patricia Cooley patticoole...@gmail.com To: 'Barbara Alma' balmat...@aol.com; RPall rp...@neillsupply.com; tmic-list tmic-list@eskimo.com Sent: Wed, Dec 8, 2010 7:04 am Subject: RE: [TMIC] question Barbara my husband had double knee replacement in 2006. Whatever pain he had must not have been too bad as he didn't complain. I think the one thing that made it easier for him is doing your pre-surgery exercised to strengthen leg muscles. A month before surgery he a given a 3-ring binder with all the excises listed. He did them faithfully all day so his body was ready for the demand surgery would put on his legs. In fact, he only went to P.T. for about 3-4 weeks, as they said they couldn't do any more for him and Medicare wouldn't pay for it any more. He was driving again in less than 4 weeks. Of course, he didn't have any other health problems, which might make a big difference. Good luck with whatever you decide to do. Patti - Wisconsin From: Barbara Alma [mailto:balmat...@aol.com mailto:balmat...@aol.com? ] Sent: Wednesday, December 08, 2010 2:04 AM To: rp...@neillsupply.com; tmic-list@eskimo.com Subject: Re: [TMIC] question Hi Rob, After having trouble with what I thought was my leg due to 2 DVT's and poor circulation, I found out that I am not totally bone on bone yet, but there is a lot of arthritis, which means I could get the replacement. I'm only 59, so figure if I can put it off for awhile, I will. As much as I walk, I'll probably never wear it out. I was actually on schedule for a knee replacement last year when I asked to see a physical therapist in order to best improve the strength in my body so I could get through the rehab in the best way possible. The therapist told me that the knee is no walk in the park. It is extremely painful, after the surgery, but especially the rehab. I don't understand
Re: [TMIC] question
I had a total left hip replaced in 1993. The butt was sore from all that cutting, etc, but the joint inside did and does function smoothly. It was during the rehab period when I popped my Achille's tendon, but that's another story. Alton On Dec 7, 2010, at 11:43 AM, Robert Pall wrote: Have any of you gotten replacement hips or knees…..I think I may need a new knee and I was wondering….. if you have no feeling (other than pain) how do you rehab…surely you cannot do it the normal rehab way? Thanks Rob in New Jersey
Re: [TMIC] question
Re: [TMIC] questionDalton, you said you are going to see your neuro, but have you seen a pain management doc?He has done far more for me than my neuro. Good luck, Janice From: Dalton Garis Sent: Wednesday, December 08, 2010 9:58 AM To: Bernie ; TMIC Subject: Re: [TMIC] question Well, friends; Since I last wrote, I am unable to walk very far or even stand up for very long. Probably just temporary, but the pain in my limbs and torso is really intense. Gotta see the neuro. I can’t even imagine how I will get to work tomorrow, or what I will do once there. I will ask neuro about Tegritol, but I already get convulsions and cramps, so I don’t know what he will think. But I gotta get a handle on this pain or its game over. Thanks, all. Dalton From: Bernie wlmailhtml:bpe...@austin.rr.com Date: Wed, 08 Dec 2010 03:30:19 -0600 To: Dalton Garis wlmailhtml:malugss...@gmail.com, TMIC wlmailhtml:tmic-list@eskimo.com Subject: Re: [TMIC] question Hey Dalton, Shot in the dark, but my doctors put me on Tegratol. Now it's original use is for seizures, but one of the side effects is it does sometimes stop the electrical, lightning bolt sensations. I was on it for a while, but started having seizures; my body couldn't metabolize the Tegratol correctly so it caused me to have seizures. It is a rare occurrence, but I seem to get them all...lol. But while I was taking it, it did help a lot with the 'electrical' impulses and shocks going through me. Might ask your doctor about it... Namaste, Bernie in Texas On 12/8/2010 2:59 AM, Dalton Garis wrote: May I break in with a question of my own? I am having a great deal of trouble with cramping and what I just learned is called hypertonis, which is too much muscle tone and willingness to contract, and the feedback loop to the brain that would tell the muscle not to contract being damaged by the TM in my brainstem, where the lesion was actually found. I can't continue to function with this hypertonis, which feels as if I am being electrocuted from the base of my spine, all the way down my legs and arms, so that it hurts a lot to move at all, or even talk. Only by being completely still and relaxed does this pain subside. Have any of you had experience with this? And if so, can you recommend a medication which might be useful? Thanks, and hope to hear back soon, Dalton On Dec 8, 2010, at 12:03 PM, Barbara Alma wrote: Hi Rob, After having trouble with what I thought was my leg due to 2 DVT's and poor circulation, I found out that I am not totally bone on bone yet, but there is a lot of arthritis, which means I could get the replacement. I'm only 59, so figure if I can put it off for awhile, I will. As much as I walk, I'll probably never wear it out. I was actually on schedule for a knee replacement last year when I asked to see a physical therapist in order to best improve the strength in my body so I could get through the rehab in the best way possible. The therapist told me that the knee is no walk in the park. It is extremely painful, after the surgery, but especially the rehab. I don't understand what you mean about rehab differently. From what I understand, and I really didn't go into it all the way, you have exercises and walking. He told me that a very painful part is straightening the knee, as it will want to be bent to be in less pain, but not good since you develop scar tissue very quickly and if not careful, you will not be able to straighten it fully. I had a couple of visits and from the exercises that I was doing for my legs I no longer had the pain that I was having. At the time I also was having a lot of pain with my shoulder over for a year and a half at that point, so knew it would be extra painful on the shoulder. I use canadian crutches or a rolling walker to get around, and the orthopedic surgeon says that I walk on my shoulders, lol. I had rotator cuff surgery and a bone spur removed two months ago and am no longer in pain there, so when I really need the knee, I'll hopefully be in better shape. Good luck Rob, just thought I'd share my small bit of knowledge. Hugs, Barbara A in Auburn CA -Original Message- From: Robert Pall wlmailhtml:rp...@neillsupply.com To: tmic-list wlmailhtml:tmic-list@eskimo.com Sent: Tue, Dec 7, 2010 8:43 am Subject: [TMIC] question Have any of you gotten replacement hips or knees…..I think I may need a new knee and I was wondering….. if you have no feeling (other than pain) how do you rehab…surely you cannot do it the normal rehab way? Thanks Rob in New Jersey
Re: [TMIC] question
We don¹t have such things here; No doubt the ³locals² have one, but for us expats, it¹s pretty basic. Essentially, if something fancy is needed the locals are flown to some European or North American country for treatment. But if we are in need of such a thing, we are sent home and our work visa is cancelled. The locals are a family, meaning that the weak members are supported. The expats are a team, meaning that the weak members are cut and sent home. Dalton From: Janice Nichols jan...@centurytel.net Date: Sat, 11 Dec 2010 16:21:15 -0600 To: Dalton Garis malugss...@gmail.com, Bernie bpe...@austin.rr.com, TMIC tmic-list@eskimo.com Subject: Re: [TMIC] question Dalton, you said you are going to see your neuro, but have you seen a pain management doc?He has done far more for me than my neuro. Good luck, Janice From: Dalton Garis mailto:malugss...@gmail.com Sent: Wednesday, December 08, 2010 9:58 AM To: Bernie mailto:bpe...@austin.rr.com ; TMIC mailto:tmic-list@eskimo.com Subject: Re: [TMIC] question Well, friends; Since I last wrote, I am unable to walk very far or even stand up for very long. Probably just temporary, but the pain in my limbs and torso is really intense. Gotta see the neuro. I can¹t even imagine how I will get to work tomorrow, or what I will do once there. I will ask neuro about Tegritol, but I already get convulsions and cramps, so I don¹t know what he will think. But I gotta get a handle on this pain or its game over. Thanks, all. Dalton From: Bernie wlmailhtml:bpe...@austin.rr.com Date: Wed, 08 Dec 2010 03:30:19 -0600 To: Dalton Garis wlmailhtml:malugss...@gmail.com, TMIC wlmailhtml:tmic-list@eskimo.com Subject: Re: [TMIC] question Hey Dalton, Shot in the dark, but my doctors put me on Tegratol. Now it's original use is for seizures, but one of the side effects is it does sometimes stop the electrical, lightning bolt sensations. I was on it for a while, but started having seizures; my body couldn't metabolize the Tegratol correctly so it caused me to have seizures. It is a rare occurrence, but I seem to get them all...lol. But while I was taking it, it did help a lot with the 'electrical' impulses and shocks going through me. Might ask your doctor about it... Namaste, Bernie in Texas On 12/8/2010 2:59 AM, Dalton Garis wrote: May I break in with a question of my own? I am having a great deal of trouble with cramping and what I just learned is called hypertonis, which is too much muscle tone and willingness to contract, and the feedback loop to the brain that would tell the muscle not to contract being damaged by the TM in my brainstem, where the lesion was actually found. I can't continue to function with this hypertonis, which feels as if I am being electrocuted from the base of my spine, all the way down my legs and arms, so that it hurts a lot to move at all, or even talk. Only by being completely still and relaxed does this pain subside. Have any of you had experience with this? And if so, can you recommend a medication which might be useful? Thanks, and hope to hear back soon, Dalton On Dec 8, 2010, at 12:03 PM, Barbara Alma wrote: Hi Rob, After having trouble with what I thought was my leg due to 2 DVT's and poor circulation, I found out that I am not totally bone on bone yet, but there is a lot of arthritis, which means I could get the replacement. I'm only 59, so figure if I can put it off for awhile, I will. As much as I walk, I'll probably never wear it out. I was actually on schedule for a knee replacement last year when I asked to see a physical therapist in order to best improve the strength in my body so I could get through the rehab in the best way possible. The therapist told me that the knee is no walk in the park. It is extremely painful, after the surgery, but especially the rehab. I don't understand what you mean about rehab differently. From what I understand, and I really didn't go into it all the way, you have exercises and walking. He told me that a very painful part is straightening the knee, as it will want to be bent to be in less pain, but not good since you develop scar tissue very quickly and if not careful, you will not be able to straighten it fully. I had a couple of visits and from the exercises that I was doing for my legs I no longer had the pain that I was having. At the time I also was having a lot of pain with my shoulder over for a year and a half at that point, so knew it would be extra painful on the shoulder. I use canadian crutches or a rolling walker to get around, and the orthopedic surgeon says that I walk on my shoulders, lol. I had rotator cuff surgery and a bone spur removed two months ago and am no longer in pain there, so when I really need the knee, I'll hopefully be in better shape. Good
Re: [TMIC] question
I had a total hip seventeen years ago - beyond my memory of details, Alton On Dec 7, 2010, at 11:43 AM, Robert Pall wrote: Have any of you gotten replacement hips or knees…..I think I may need a new knee and I was wondering….. if you have no feeling (other than pain) how do you rehab…surely you cannot do it the normal rehab way? Thanks Rob in New Jersey
Re: [TMIC] question
I'm still having contracture in both legs. It is painful when I try to straighten my legs more than about 60 degrees, my knees just won't allow them to straighten any further I recently completed about 3 months of painful physical therapy at home, and now I am in the process of trying to arrange wheelchair transport to an outpatient PT group. The 20 degree weather is not helping, but I have to do this. Years of being sedentary/bedridden has caused this according to the PT. I guess I just gave up when my Mom got sick and passed, but I'm trying the best I can. Best to all, Kevin
Re: [TMIC] question
Kevin I suppose all we can do is all we can do. I hate the problems that i not only share with TM'rs but the problems that I do not have I cringe when i read of them. My own paranoia leads me to thoughts of oh no! is that what I am heading for! but thats just thoughts and I suppose we all fight our own thoughts. I hate to see others in struggles and pain of any sort. nothing but positive thoughts towards you! for those that have fought and have regained this or that is always an encouragment to us all! stay after it man,,,need to hear a victory story! keep on the fireing line! John in WV --- On Thu, 12/9/10, Kevin Wolfthal wolft...@optonline.net wrote: From: Kevin Wolfthal wolft...@optonline.net Subject: Re: [TMIC] question To: tmic-list@eskimo.com Date: Thursday, December 9, 2010, 4:21 AM I'm still having contracture in both legs. It is painful when I try to straighten my legs more than about 60 degrees, my knees just won't allow them to straighten any further I recently completed about 3 months of painful physical therapy at home, and now I am in the process of trying to arrange wheelchair transport to an outpatient PT group. The 20 degree weather is not helping, but I have to do this. Years of being sedentary/bedridden has caused this according to the PT. I guess I just gave up when my Mom got sick and passed, but I'm trying the best I can. Best to all, Kevin
Re: [TMIC] question
Hi Rob, After having trouble with what I thought was my leg due to 2 DVT's and poor circulation, I found out that I am not totally bone on bone yet, but there is a lot of arthritis, which means I could get the replacement. I'm only 59, so figure if I can put it off for awhile, I will. As much as I walk, I'll probably never wear it out. I was actually on schedule for a knee replacement last year when I asked to see a physical therapist in order to best improve the strength in my body so I could get through the rehab in the best way possible. The therapist told me that the knee is no walk in the park. It is extremely painful, after the surgery, but especially the rehab. I don't understand what you mean about rehab differently. From what I understand, and I really didn't go into it all the way, you have exercises and walking. He told me that a very painful part is straightening the knee, as it will want to be bent to be in less pain, but not good since you develop scar tissue very quickly and if not careful, you will not be able to straighten it fully. I had a couple of visits and from the exercises that I was doing for my legs I no longer had the pain that I was having. At the time I also was having a lot of pain with my shoulder over for a year and a half at that point, so knew it would be extra painful on the shoulder. I use canadian crutches or a rolling walker to get around, and the orthopedic surgeon says that I walk on my shoulders, lol. I had rotator cuff surgery and a bone spur removed two months ago and am no longer in pain there, so when I really need the knee, I'll hopefully be in better shape. Good luck Rob, just thought I'd share my small bit of knowledge. Hugs, Barbara A in Auburn CA -Original Message- From: Robert Pall rp...@neillsupply.com To: tmic-list tmic-list@eskimo.com Sent: Tue, Dec 7, 2010 8:43 am Subject: [TMIC] question Have any of you gotten replacement hips or knees…..I think I may need a new knee and I was wondering….. if you have no feeling (other than pain) how do you rehab…surely you cannot do it the normal rehab way? Thanks Rob in New Jersey
Re: [TMIC] question
May I break in with a question of my own? I am having a great deal of trouble with cramping and what I just learned is called hypertonis, which is too much muscle tone and willingness to contract, and the feedback loop to the brain that would tell the muscle not to contract being damaged by the TM in my brainstem, where the lesion was actually found. I can't continue to function with this hypertonis, which feels as if I am being electrocuted from the base of my spine, all the way down my legs and arms, so that it hurts a lot to move at all, or even talk. Only by being completely still and relaxed does this pain subside. Have any of you had experience with this? And if so, can you recommend a medication which might be useful? Thanks, and hope to hear back soon, Dalton On Dec 8, 2010, at 12:03 PM, Barbara Alma wrote: Hi Rob, After having trouble with what I thought was my leg due to 2 DVT's and poor circulation, I found out that I am not totally bone on bone yet, but there is a lot of arthritis, which means I could get the replacement. I'm only 59, so figure if I can put it off for awhile, I will. As much as I walk, I'll probably never wear it out. I was actually on schedule for a knee replacement last year when I asked to see a physical therapist in order to best improve the strength in my body so I could get through the rehab in the best way possible. The therapist told me that the knee is no walk in the park. It is extremely painful, after the surgery, but especially the rehab. I don't understand what you mean about rehab differently. From what I understand, and I really didn't go into it all the way, you have exercises and walking. He told me that a very painful part is straightening the knee, as it will want to be bent to be in less pain, but not good since you develop scar tissue very quickly and if not careful, you will not be able to straighten it fully. I had a couple of visits and from the exercises that I was doing for my legs I no longer had the pain that I was having. At the time I also was having a lot of pain with my shoulder over for a year and a half at that point, so knew it would be extra painful on the shoulder. I use canadian crutches or a rolling walker to get around, and the orthopedic surgeon says that I walk on my shoulders, lol. I had rotator cuff surgery and a bone spur removed two months ago and am no longer in pain there, so when I really need the knee, I'll hopefully be in better shape. Good luck Rob, just thought I'd share my small bit of knowledge. Hugs, Barbara A in Auburn CA -Original Message- From: Robert Pall rp...@neillsupply.com To: tmic-list tmic-list@eskimo.com Sent: Tue, Dec 7, 2010 8:43 am Subject: [TMIC] question Have any of you gotten replacement hips or knees…..I think I may need a new knee and I was wondering….. if you have no feeling (other than pain) how do you rehab…surely you cannot do it the normal rehab way? Thanks Rob in New Jersey
Re: [TMIC] question
*Hey Dalton, Shot in the dark, but my doctors put me on Tegratol. Now it's original use is for seizures, but one of the side effects is it does sometimes stop the electrical, lightning bolt sensations. I was on it for a while, but started having seizures; my body couldn't metabolize the Tegratol correctly so it caused me to have seizures. It is a rare occurrence, but I seem to get them all...lol. But while I was taking it, it did help a lot with the 'electrical' impulses and shocks going through me. Might ask your doctor about it... Namaste, Bernie in Texas* On 12/8/2010 2:59 AM, Dalton Garis wrote: May I break in with a question of my own? I am having a great deal of trouble with cramping and what I just learned is called *hypertonis*, which is too much muscle tone and willingness to contract, and the feedback loop to the brain that would tell the muscle not to contract being damaged by the TM in my brainstem, where the lesion was actually found. I can't continue to function with this hypertonis, which feels as if I am being electrocuted from the base of my spine, all the way down my legs and arms, so that it hurts a lot to move at all, or even talk. Only by being completely still and relaxed does this pain subside. Have any of you had experience with this? And if so, can you recommend a medication which might be useful? Thanks, and hope to hear back soon, Dalton On Dec 8, 2010, at 12:03 PM, Barbara Alma wrote: Hi Rob, After having trouble with what I thought was my leg due to 2 DVT's and poor circulation, I found out that I am not totally bone on bone yet, but there is a lot of arthritis, which means I could get the replacement. I'm only 59, so figure if I can put it off for awhile, I will. As much as I walk, I'll probably never wear it out. I was actually on schedule for a knee replacement last year when I asked to see a physical therapist in order to best improve the strength in my body so I could get through the rehab in the best way possible. The therapist told me that the knee is no walk in the park. It is extremely painful, after the surgery, but especially the rehab. I don't understand what you mean about rehab differently. From what I understand, and I really didn't go into it all the way, you have exercises and walking. He told me that a very painful part is straightening the knee, as it will want to be bent to be in less pain, but not good since you develop scar tissue very quickly and if not careful, you will not be able to straighten it fully. I had a couple of visits and from the exercises that I was doing for my legs I no longer had the pain that I was having. At the time I also was having a lot of pain with my shoulder over for a year and a half at that point, so knew it would be extra painful on the shoulder. I use canadian crutches or a rolling walker to get around, and the orthopedic surgeon says that I walk on my shoulders, lol. I had rotator cuff surgery and a bone spur removed two months ago and am no longer in pain there, so when I /really/ need the knee, I'll hopefully be in better shape. Good luck Rob, just thought I'd share my small bit of knowledge. Hugs, Barbara A in Auburn CA -Original Message- From: Robert Pall rp...@neillsupply.com mailto:rp...@neillsupply.com To: tmic-list tmic-list@eskimo.com mailto:tmic-list@eskimo.com Sent: Tue, Dec 7, 2010 8:43 am Subject: [TMIC] question Have any of you gotten replacement hips or knees…..I think I may need a new knee and I was wondering….. if you have no feeling (other than pain) how do you rehab…surely you cannot do it the normal rehab way? Thanks Rob in New Jersey No virus found in this message. Checked by AVG - www.avg.com http://www.avg.com Version: 10.0.1170 / Virus Database: 426/3303 - Release Date: 12/07/10
Re: [TMIC] question
I also take Tegretol, it helps me the most with my banding. Was suprised with the amount of relief I got within a short time after starting it. Lynne --- On Wed, 12/8/10, Bernie bpe...@austin.rr.com wrote: From: Bernie bpe...@austin.rr.com Subject: Re: [TMIC] question To: Dalton Garis malugss...@gmail.com, TMIC tmic-list@eskimo.com Date: Wednesday, December 8, 2010, 4:30 AM Hey Dalton, Shot in the dark, but my doctors put me on Tegratol. Now it's original use is for seizures, but one of the side effects is it does sometimes stop the electrical, lightning bolt sensations. I was on it for a while, but started having seizures; my body couldn't metabolize the Tegratol correctly so it caused me to have seizures. It is a rare occurrence, but I seem to get them all...lol. But while I was taking it, it did help a lot with the 'electrical' impulses and shocks going through me. Might ask your doctor about it... Namaste, Bernie in Texas On 12/8/2010 2:59 AM, Dalton Garis wrote: May I break in with a question of my own? I am having a great deal of trouble with cramping and what I just learned is called hypertonis, which is too much muscle tone and willingness to contract, and the feedback loop to the brain that would tell the muscle not to contract being damaged by the TM in my brainstem, where the lesion was actually found. I can't continue to function with this hypertonis, which feels as if I am being electrocuted from the base of my spine, all the way down my legs and arms, so that it hurts a lot to move at all, or even talk. Only by being completely still and relaxed does this pain subside. Have any of you had experience with this? And if so, can you recommend a medication which might be useful? Thanks, and hope to hear back soon, Dalton On Dec 8, 2010, at 12:03 PM, Barbara Alma wrote: Hi Rob, After having trouble with what I thought was my leg due to 2 DVT's and poor circulation, I found out that I am not totally bone on bone yet, but there is a lot of arthritis, which means I could get the replacement. I'm only 59, so figure if I can put it off for awhile, I will. As much as I walk, I'll probably never wear it out. I was actually on schedule for a knee replacement last year when I asked to see a physical therapist in order to best improve the strength in my body so I could get through the rehab in the best way possible. The therapist told me that the knee is no walk in the park. It is extremely painful, after the surgery, but especially the rehab. I don't understand what you mean about rehab differently. From what I understand, and I really didn't go into it all the way, you have exercises and walking. He told me that a very painful part is straightening the knee, as it will want to be bent to be in less pain, but not good since you develop scar tissue very quickly and if not careful, you will not be able to straighten it fully. I had a couple of visits and from the exercises that I was doing for my legs I no longer had the pain that I was having. At the time I also was having a lot of pain with my shoulder over for a year and a half at that point, so knew it would be extra painful on the shoulder. I use canadian crutches or a rolling walker to get around, and the orthopedic surgeon says that I walk on my shoulders, lol. I had rotator cuff surgery and a bone spur removed two months ago and am no longer in pain there, so when I really need the knee, I'll hopefully be in better shape. Good luck Rob, just thought I'd share my small bit of knowledge. Hugs, Barbara A in Auburn CA -Original Message- From: Robert Pall rp...@neillsupply.com To: tmic-list tmic-list@eskimo.com Sent: Tue, Dec 7, 2010 8:43 am Subject: [TMIC] question Have any of you gotten replacement hips or knees…..I think I may need a new knee and I was wondering….. if you have no feeling (other than pain) how do you rehab…surely you cannot do it the normal rehab way? Thanks Rob in New Jersey No virus found in this message. Checked by AVG - www.avg.com Version: 10.0.1170 / Virus Database: 426/3303 - Release Date: 12/07/10
RE: [TMIC] question
Barbara my husband had double knee replacement in 2006. Whatever pain he had must not have been too bad as he didn’t complain. I think the one thing that made it easier for him is doing your pre-surgery exercised to strengthen leg muscles. A month before surgery he a given a 3-ring binder with all the excises listed. He did them faithfully all day so his body was ready for the demand surgery would put on his legs. In fact, he only went to P.T. for about 3-4 weeks, as they said they couldn’t do any more for him and Medicare wouldn’t pay for it any more. He was driving again in less than 4 weeks. Of course, he didn’t have any other health problems, which might make a big difference. Good luck with whatever you decide to do. Patti - Wisconsin From: Barbara Alma [mailto:balmat...@aol.com] Sent: Wednesday, December 08, 2010 2:04 AM To: rp...@neillsupply.com; tmic-list@eskimo.com Subject: Re: [TMIC] question Hi Rob, After having trouble with what I thought was my leg due to 2 DVT's and poor circulation, I found out that I am not totally bone on bone yet, but there is a lot of arthritis, which means I could get the replacement. I'm only 59, so figure if I can put it off for awhile, I will. As much as I walk, I'll probably never wear it out. I was actually on schedule for a knee replacement last year when I asked to see a physical therapist in order to best improve the strength in my body so I could get through the rehab in the best way possible. The therapist told me that the knee is no walk in the park. It is extremely painful, after the surgery, but especially the rehab. I don't understand what you mean about rehab differently. From what I understand, and I really didn't go into it all the way, you have exercises and walking. He told me that a very painful part is straightening the knee, as it will want to be bent to be in less pain, but not good since you develop scar tissue very quickly and if not careful, you will not be able to straighten it fully. I had a couple of visits and from the exercises that I was doing for my legs I no longer had the pain that I was having. At the time I also was having a lot of pain with my shoulder over for a year and a half at that point, so knew it would be extra painful on the shoulder. I use canadian crutches or a rolling walker to get around, and the orthopedic surgeon says that I walk on my shoulders, lol. I had rotator cuff surgery and a bone spur removed two months ago and am no longer in pain there, so when I really need the knee, I'll hopefully be in better shape. Good luck Rob, just thought I'd share my small bit of knowledge. Hugs, Barbara A in Auburn CA -Original Message- From: Robert Pall rp...@neillsupply.com To: tmic-list tmic-list@eskimo.com Sent: Tue, Dec 7, 2010 8:43 am Subject: [TMIC] question Have any of you gotten replacement hips or knees…..I think I may need a new knee and I was wondering….. if you have no feeling (other than pain) how do you rehab…surely you cannot do it the normal rehab way? Thanks Rob in New Jersey
Re: [TMIC] question
Well, friends; Since I last wrote, I am unable to walk very far or even stand up for very long. Probably just temporary, but the pain in my limbs and torso is really intense. Gotta see the neuro. I can¹t even imagine how I will get to work tomorrow, or what I will do once there. I will ask neuro about Tegritol, but I already get convulsions and cramps, so I don¹t know what he will think. But I gotta get a handle on this pain or its game over. Thanks, all. Dalton From: Bernie bpe...@austin.rr.com Date: Wed, 08 Dec 2010 03:30:19 -0600 To: Dalton Garis malugss...@gmail.com, TMIC tmic-list@eskimo.com Subject: Re: [TMIC] question Hey Dalton, Shot in the dark, but my doctors put me on Tegratol. Now it's original use is for seizures, but one of the side effects is it does sometimes stop the electrical, lightning bolt sensations. I was on it for a while, but started having seizures; my body couldn't metabolize the Tegratol correctly so it caused me to have seizures. It is a rare occurrence, but I seem to get them all...lol. But while I was taking it, it did help a lot with the 'electrical' impulses and shocks going through me. Might ask your doctor about it... Namaste, Bernie in Texas On 12/8/2010 2:59 AM, Dalton Garis wrote: May I break in with a question of my own? I am having a great deal of trouble with cramping and what I just learned is called hypertonis, which is too much muscle tone and willingness to contract, and the feedback loop to the brain that would tell the muscle not to contract being damaged by the TM in my brainstem, where the lesion was actually found. I can't continue to function with this hypertonis, which feels as if I am being electrocuted from the base of my spine, all the way down my legs and arms, so that it hurts a lot to move at all, or even talk. Only by being completely still and relaxed does this pain subside. Have any of you had experience with this? And if so, can you recommend a medication which might be useful? Thanks, and hope to hear back soon, Dalton On Dec 8, 2010, at 12:03 PM, Barbara Alma wrote: Hi Rob, After having trouble with what I thought was my leg due to 2 DVT's and poor circulation, I found out that I am not totally bone on bone yet, but there is a lot of arthritis, which means I could get the replacement. I'm only 59, so figure if I can put it off for awhile, I will. As much as I walk, I'll probably never wear it out. I was actually on schedule for a knee replacement last year when I asked to see a physical therapist in order to best improve the strength in my body so I could get through the rehab in the best way possible. The therapist told me that the knee is no walk in the park. It is extremely painful, after the surgery, but especially the rehab. I don't understand what you mean about rehab differently. From what I understand, and I really didn't go into it all the way, you have exercises and walking. He told me that a very painful part is straightening the knee, as it will want to be bent to be in less pain, but not good since you develop scar tissue very quickly and if not careful, you will not be able to straighten it fully. I had a couple of visits and from the exercises that I was doing for my legs I no longer had the pain that I was having. At the time I also was having a lot of pain with my shoulder over for a year and a half at that point, so knew it would be extra painful on the shoulder. I use canadian crutches or a rolling walker to get around, and the orthopedic surgeon says that I walk on my shoulders, lol. I had rotator cuff surgery and a bone spur removed two months ago and am no longer in pain there, so when I really need the knee, I'll hopefully be in better shape. Good luck Rob, just thought I'd share my small bit of knowledge. Hugs, Barbara A in Auburn CA -Original Message- From: Robert Pall rp...@neillsupply.com To: tmic-list tmic-list@eskimo.com Sent: Tue, Dec 7, 2010 8:43 am Subject: [TMIC] question Have any of you gotten replacement hips or knees..I think I may need a new knee and I was wondering.. if you have no feeling (other than pain) how do you rehabsurely you cannot do it the normal rehab way? Thanks Rob in New Jersey No virus found in this message. Checked by AVG - www.avg.com http://www.avg.com Version: 10.0.1170 / Virus Database: 426/3303 - Release Date: 12/07/10
Re: [TMIC] question
Not an answer but a suggestion. If your lesion is in your brainstem perhaps some of the the medications and approaches used for MS might be helpful. Akua May I break in with a question of my own? I am having a great deal of trouble with cramping and what I just learned is called hypertonis, which is too much muscle tone and willingness to contract, and the feedback loop to the brain that would tell the muscle not to contract being damaged by the TM in my brainstem, where the lesion was actually found. I can't continue to function with this hypertonis, which feels as if I am being electrocuted from the base of my spine, all the way down my legs and arms, so that it hurts a lot to move at all, or even talk. Only by being completely still and relaxed does this pain subside. Have any of you had experience with this? And if so, can you recommend a medication which might be useful? Thanks, and hope to hear back soon, Dalton --
Re: [TMIC] question - knee replacement
Hi Patti, I'm not sure if he is right or wrong, but my physical therapist told me that I probably have hypersensitivity. I am not sure if that had anything to do with the pain issue, but I don't think so. I think it's due to the fact that I don't walk well and that I wouldn't be able to do the rehab as well or in the same manner as somebody who is walking much better. I know that they keep you comfortable with pain meds, but I went through plenty with my shoulder, needing to put pressure on it just to be able to ambulate about a little. I still needed to get back and forth to the bathroom, on and off a toilet, etc and that's just the minimum. Wow, it seems like a double replacement is rather common. Although I cannot imagine doing 2 at once, it may be nice if you need to do them. to get the pain and rehab over with all at once. And.then on with your life! Hugs, Barbara A in Auburn CA -Original Message- From: Patricia Cooley patticoole...@gmail.com To: 'Barbara Alma' balmat...@aol.com; RPall rp...@neillsupply.com; tmic-list tmic-list@eskimo.com Sent: Wed, Dec 8, 2010 7:04 am Subject: RE: [TMIC] question Barbara my husband had double knee replacement in 2006. Whatever pain he had must not have been too bad as he didn’t complain. I think the one thing that made it easier for him is doing your pre-surgery exercised to strengthen leg muscles. A month before surgery he a given a 3-ring binder with all the excises listed. He did them faithfully all day so his body was ready for the demand surgery would put on his legs. In fact, he only went to P.T. for about 3-4 weeks, as they said they couldn’t do any more for him and Medicare wouldn’t pay for it any more. He was driving again in less than 4 weeks. Of course, he didn’t have any other health problems, which might make a big difference. Good luck with whatever you decide to do. Patti - Wisconsin From: Barbara Alma [mailto:balmat...@aol.com] Sent: Wednesday, December 08, 2010 2:04 AM To: rp...@neillsupply.com; tmic-list@eskimo.com Subject: Re: [TMIC] question Hi Rob, After having trouble with what I thought was my leg due to 2 DVT's and poor circulation, I found out that I am not totally bone on bone yet, but there is a lot of arthritis, which means I could get the replacement. I'm only 59, so figure if I can put it off for awhile, I will. As much as I walk, I'll probably never wear it out. I was actually on schedule for a knee replacement last year when I asked to see a physical therapist in order to best improve the strength in my body so I could get through the rehab in the best way possible. The therapist told me that the knee is no walk in the park. It is extremely painful, after the surgery, but especially the rehab. I don't understand what you mean about rehab differently. From what I understand, and I really didn't go into it all the way, you have exercises and walking. He told me that a very painful part is straightening the knee, as it will want to be bent to be in less pain, but not good since you develop scar tissue very quickly and if not careful, you will not be able to straighten it fully. I had a couple of visits and from the exercises that I was doing for my legs I no longer had the pain that I was having. At the time I also was having a lot of pain with my shoulder over for a year and a half at that point, so knew it would be extra painful on the shoulder. I use canadian crutches or a rolling walker to get around, and the orthopedic surgeon says that I walk on my shoulders, lol. I had rotator cuff surgery and a bone spur removed two months ago and am no longer in pain there, so when I really need the knee, I'll hopefully be in better shape. Good luck Rob, just thought I'd share my small bit of knowledge. Hugs, Barbara A in Auburn CA -Original Message- From: Robert Pall rp...@neillsupply.com To: tmic-list tmic-list@eskimo.com Sent: Tue, Dec 7, 2010 8:43 am Subject: [TMIC] question Have any of you gotten replacement hips or knees…..I think I may need a new knee and I was wondering….. if you have no feeling (other than pain) how do you rehab…surely you cannot do it the normal rehab way? Thanks Rob in New Jersey
Re: [TMIC] question
Re: [TMIC] questionI've read elsewhere that once one's brain is affected by myelitis or sclerosis, that makes it an MS issue. And there are several medications to ameliorate that one. BobbyJim From: Akua To: tmic-list@eskimo.com Sent: Wednesday, December 08, 2010 12:47Subject: Re: [TMIC] question Not an answer but a suggestion. If your lesion is in your brainstem perhaps some of the the medications and approaches used for MS might be helpful. Akua May I break in with a question of my own? I am having a great deal of trouble with cramping and what I just learned is called hypertonis, which is too much muscle tone and willingness to contract, and the feedback loop to the brain that would tell the muscle not to contract being damaged by the TM in my brainstem, where the lesion was actually found. I can't continue to function with this hypertonis, which feels as if I am being electrocuted from the base of my spine, all the way down my legs and arms, so that it hurts a lot to move at all, or even talk. Only by being completely still and relaxed does this pain subside. Have any of you had experience with this? And if so, can you recommend a medication which might be useful? Thanks, and hope to hear back soon, Dalton
Re: [TMIC] question
Thanks, Bobby Jim; In fact, they thought it was MS to begin with, and I was also convinced of this until my attack on 23 April, when it hit both sides, and I became as I am now. But we share the same meds to a large extent, Baclofen, as an example. My neuro won¹t give me Baclofen because he says I would become too fatigued. But I think it¹s time because with this pain it¹s game-over, anyway. Dalton From: bobby jim elbobber...@earthlink.net Date: Wed, 8 Dec 2010 18:27:55 -0600 To: tmic-list@eskimo.com, Akua a...@artfarm.com Subject: Re: [TMIC] question Resent-From: tmic-list@eskimo.com Resent-Date: Wed, 8 Dec 2010 16:28:30 -0800 I've read elsewhere that once one's brain is affected by myelitis or sclerosis, that makes it an MS issue. And there are several medications to ameliorate that one. BobbyJim From: Akua mailto:a...@artfarm.com To: tmic-list@eskimo.com Sent: Wednesday, December 08, 2010 12:47 Subject: Re: [TMIC] question Not an answer but a suggestion. If your lesion is in your brainstem perhaps some of the the medications and approaches used for MS might be helpful. Akua May I break in with a question of my own? I am having a great deal of trouble with cramping and what I just learned is called hypertonis, which is too much muscle tone and willingness to contract, and the feedback loop to the brain that would tell the muscle not to contract being damaged by the TM in my brainstem, where the lesion was actually found. I can't continue to function with this hypertonis, which feels as if I am being electrocuted from the base of my spine, all the way down my legs and arms, so that it hurts a lot to move at all, or even talk. Only by being completely still and relaxed does this pain subside. Have any of you had experience with this? And if so, can you recommend a medication which might be useful? Thanks, and hope to hear back soon, Dalton
RE: [TMIC] Question
I took Marinol for a couple of yearsit just made me hungry! Rob in New Jersey From: Regina Rummel [mailto:regina...@sbcglobal.net] Sent: Monday, September 20, 2010 11:36 AM To: tmic-list@eskimo.com Subject: [TMIC] Question Does anyone take Marinol for pain? And what's the difference between Marinol and Sativex? And, if Marinol is approved in the U.S., how come I never see it on the list of meds you list that you take from time to time. Just curious. R
Re: [TMIC] question
Hi, I was on it yrs ago (have had tm since 8/13/95) , then went off it due to the cost. When it went generic,I tried it again,and it didn't work anymore. So,maybe it's possible that it loses effectiveness for some people. Cheryl in Easthampton,MA. --- On Thu, 9/16/10, Chantal Lamontagne m...@ntl.sympatico.ca wrote: From: Chantal Lamontagne m...@ntl.sympatico.caSubject: [TMIC] questionTo: tmic-list@eskimo.comDate: Thursday, September 16, 2010, 10:12 AM Hi everyone, I have had TM since about 7 years agoI have been reading alot of your mails I have a question about medication...I have been taking Gabapentin -2700mg a day. Recently my legs started acting up...constant shooting pins aand needles..I did go to my family Dr and she sent a request for an MRI of my head and spinal cord...the Dr has herself MS and found it funny that we have alot of simular symptoms...she is wonderinf if I do have TM or MS...she will send me to see my neuro (12 hrs away) depending on the results of my MRI (takes about 1 to 2 months)I am wondering if it is possible that Gabapentin is no longer helping me...
Re: [TMIC] question
NatureI have not had TM as long as you have, and I only take 1800mg a day. I have a good friend that has MS and our symptoms are very much alike.Some of the meds are the same too.Why would it take so long to get the MRI results? Janice From: Chantal Lamontagne Sent: Thursday, September 16, 2010 9:12 AM To: tmic-list@eskimo.com Subject: [TMIC] question Hi everyone, I have had TM since about 7 years agoI have been reading alot of your mails I have a question about medication...I have been taking Gabapentin -2700mg a day. Recently my legs started acting up...constant shooting pins aand needles..I did go to my family Dr and she sent a request for an MRI of my head and spinal cord...the Dr has herself MS and found it funny that we have alot of simular symptoms...she is wonderinf if I do have TM or MS...she will send me to see my neuro (12 hrs away) depending on the results of my MRI (takes about 1 to 2 months)I am wondering if it is possible that Gabapentin is no longer helping me... anabnr2.gifNature Bkgrd.jpg
Re: [TMIC] question
Chantal, Where in Canada do you live? I live part time in Montreal, and go to McGill University, Montreal General Hospital, Pain Clinic. Dr. MarkWare started me on Sativex which is used for pain, spasm, and alot of the other problems of TM. Take Care Frank attachment: anabnr2.gifattachment: Nature Bkgrd.jpg
RE: [TMIC] Question
Idiopathic means they don't know what caused the TM. -Original Message- From: jack...@att.blackberry.net [mailto:jack...@att.blackberry.net] Sent: Thursday, September 16, 2010 11:57 PM To: TMIC Subject: [TMIC] Question What's the difference between idopathic tm and just tm ? Diagnosed with idopathic tm 2007 -memphis tn. :) Sent via BlackBerry by ATT
Re: [TMIC] Question
It means; ³Cause unknown.² That is distinct from those cases where the cause is discovered, such as from a known viral infection opening the door for TM, or something else. Dalton Abu Dhabi, United Arab Emirates From: jack...@att.blackberry.net Reply-To: jack...@att.blackberry.net Date: Fri, 17 Sep 2010 03:56:38 + To: TMIC tmic-list@eskimo.com Subject: [TMIC] Question Resent-From: tmic-list@eskimo.com Resent-Date: Thu, 16 Sep 2010 19:57:28 -0700 What's the difference between idopathic tm and just tm ? Diagnosed with idopathic tm 2007 -memphis tn. :) Sent via BlackBerry by ATT
Re: [TMIC] Question
Ruben, My advice to anyone that develops something new like that is to see your neurologist as soon as possible. Good luck, Janice -- From: Towery, Ruben Dale rdtow...@southernco.com Sent: Sunday, June 13, 2010 8:14 AM To: tmic-list@eskimo.com Subject: [TMIC] Question Hey everyone, I have another question. I am going on week 8 of being diagnosed with TM. I am able to walk and use my legs, although my left leg seems to be impacted the most. It is very weak, and I have a tedancy to lose my balace sometimes. I can usually walk without a cane, but I typically use one just to be safe. I started PT this week, which involves a lot of leg exercises, using my ab lounger to strenghten my core, pushups against a wall to strengthen my upper body, and riding a stationary bike for 15 minutes. I do this every day and can tell a big difference in the strength of my left leg. Although my question is on something totaly different. My TM hit the conus of my spinal cord around T12- L1. Which is the area of the spinal cord that controls all functions of the lower part of the body. I slept last night on my right side and woke up this morning and I can't feel half of my left hand. Has this happened to anyone else before, or have some suggestions on what may have caused this. Especially since my TM has not affected my upper body at all to this point. Thanks. Ruben Towery Mount Olive, AL (Birmingham) Sent from my iPod
RE: [TMIC] QUESTION ON LARNETON
Hello Sue, I've looked at the website and it appears to be just another snake oil cure. If there were a drug or herb that was guaranteed to treat myelitis and resolve symptoms, the medical community would have jumped on it. Respectfully, Grace
Re: [TMIC] QUESTION ON LARNETON
Not necessarily. While I do believe that 99.8% of all cures out there are pure bunk, Big Pharma has a lot fo pull and they go out of their way to discredit anything natural. Do you know that there's an actual treatment that can almost cure CP if the chold is young enough? Pure oxygen in a hyperbaric chamber. There was a big study done in Quebec, but because no meds were needed, just oxygen, they pulled the plug on it. While it was a double-blind study, it wasn't hard to figure out who was getting O2 vs. air...kids who were completely immobile were walking and talking. My roomate was a student shadow and her student was in this trial, but on the placebo. Parents had to pay through the nose to go have it done in another province privately. So yes, there are sometimes cures that people don't know about because the pharma companies go out of their way to discredit and bash them so that people mistrust. My first question to myself is usually, can it hurt to try? If there's riskm, then yes, I'd be weary, but if it's something that wouldn't harm me regardless, bring it on. Laura You can easily judge the character of a man by how he treats those who can do nothing for him. -James D. Miles- http://www.bananga.com ...empowering ourselves! On Practical-Homeschooling: 10 Free or Inexpensive Homeschool Options http://www.practical-homeschooling.org On 17/04/2010 11:53 AM, Grace M. wrote: Hello Sue, I've looked at the website and it appears to be just another snake oil cure. If there were a drug or herb that was guaranteed to treat myelitis and resolve symptoms, the medical community would have jumped on it. Respectfully, Grace
RE: [TMIC] QUESTION ON LARNETON
I agree Laura, but you do have to be very careful. Right after I got TM, I saw an ad for a herbal supplement for TM that came from Hong Kong through a company in London. I sent for it and took it for several months. I did not noticed any problems or benefits, but then one of my doctors had me do a a liver test. They found my liver enzymes were in terrible shape. As soon as I stopped the drug, my enzymes went back to normal. I am so glad the doctor did a routine check, or who knows how much damage I might have done. The one good thing is that the company did refund all the money I had spent on the drug. Be wise and be careful. Patti - Wisconsin -Original Message- From: Laura Beaudin [mailto:laura.beau...@gmail.com] Sent: Saturday, April 17, 2010 1:02 PM To: Grace M. Cc: tmic-list@eskimo.com Subject: Re: [TMIC] QUESTION ON LARNETON Not necessarily. While I do believe that 99.8% of all cures out there are pure bunk, Big Pharma has a lot fo pull and they go out of their way to discredit anything natural. Do you know that there's an actual treatment that can almost cure CP if the chold is young enough? Pure oxygen in a hyperbaric chamber. There was a big study done in Quebec, but because no meds were needed, just oxygen, they pulled the plug on it. While it was a double-blind study, it wasn't hard to figure out who was getting O2 vs. air...kids who were completely immobile were walking and talking. My roomate was a student shadow and her student was in this trial, but on the placebo. Parents had to pay through the nose to go have it done in another province privately. So yes, there are sometimes cures that people don't know about because the pharma companies go out of their way to discredit and bash them so that people mistrust. My first question to myself is usually, can it hurt to try? If there's riskm, then yes, I'd be weary, but if it's something that wouldn't harm me regardless, bring it on. Laura You can easily judge the character of a man by how he treats those who can do nothing for him. -James D. Miles- http://www.bananga.com ...empowering ourselves! On Practical-Homeschooling: 10 Free or Inexpensive Homeschool Options http://www.practical-homeschooling.org On 17/04/2010 11:53 AM, Grace M. wrote: Hello Sue, I've looked at the website and it appears to be just another snake oil cure. If there were a drug or herb that was guaranteed to treat myelitis and resolve symptoms, the medical community would have jumped on it. Respectfully, Grace
Re: [TMIC] QUESTION ON LARNETON
This is a good point...and I have heard of situations where the oxygen fed hyperbaric chamber has been an effective treatment for quite a few diseases and disorders to include Multiple Sclerosis. Case in point, Ronnie Lane who was one of the founding members of the 60's band, The Small Faces developed MS and tried every treatment he could find and it was only when he found the chamber did he get any relief and actually started to get better. Here is an excerpt of an interview with Ronnie Lane that raises some very interesting information regarding the MS Society and other info. I will also provide a link to the entire interview, it is worth the read BOO: Well, no, it’s notall going to Florida. It’s all going to ARMS, to set up ARMS (In America). And Florida... Professor Neubauer is the doctor in Florida that has an HBO center. And, in fact, he’s the leading man on hyperbaric oxygen. LANE: He started it. DAVE: How long ago did this treatment come about, then? BOO: A long time ago! DAVE: It just hasn’t gotten that much attention... BOO: Well, what happened was there was a report made by a Dr. Fischer that was, I think, in 1978. That report came about (because) the MS Society hired Fischer to disprove Neubauer, and he couldn’t disprove Neubauer! I’ll show you a video in a minute. He couldn’t disprove him, and his report was completed in 1980, and it’s only just come out this year!I mean, what is it all about?! So, this whole concert is also a little bit of the rebel coming out of rock and roll!It’s not quite as straightforward! They know... LANE: One thing is for sure: there’s a bit more to this Multiple Sclerosis Society than meets the eye! Without a doubt! BOO: In thiscountry. LANE: Because they blocked going ahead for hyperbaric oxygen, and they’ve really got no right to because... BOO: They like the double –blind trial. Okay, they’re playing it super-safe. But, when ARMS was formed about six years ago... this is an English group of everybody who is fed upwith going to MS Society meetings, and they’re told you’ve got a disease... LANE: ...accept it!... DAVE: Leave it at that... BOO: You’re slowly going to become disabled. So, be a good boy now and go into your wheelchair, and make it easy on the people who have to look after you.That sort of whole mentality: There’s nothing we can do for you. And that, to me, is killing somebody before they’ve even started. The whole Action Research is Up you, MS Society! And it’s all people and friends and relatives of people who have MS that started it. The person that’s going around now about hyperbaric oxygen, his wife died! Not from MS, but from septicemia, from bedsores. It’s disgusting, isn’t it? But, HBO helps the bedsores! It helps the skin heal. And, in fact, in Whipp's Cross Hospital and in Ascot, another hospital, they have HBO units where they put people who have bedsores into their HBO chamber, completely... Link to the entire interview http://www.the-faces.com/lane/1lane2.htm Now, as far as the Larneton goes...that stuff is bunk...too many discredits that I have found and read... Kevin Weilacher N.E. Ohio (Canton) From: Laura Beaudin laura.beau...@gmail.com To: Grace M. grace...@gmail.com Cc: tmic-list@eskimo.com Sent: Sat, April 17, 2010 2:01:50 PM Subject: Re: [TMIC] QUESTION ON LARNETON Not necessarily. While I do believe that 99.8% of all cures out there are pure bunk, Big Pharma has a lot fo pull and they go out of their way to discredit anything natural. Do you know that there's an actual treatment that can almost cure CP if the chold is young enough? Pure oxygen in a hyperbaric chamber. There was a big study done in Quebec, but because no meds were needed, just oxygen, they pulled the plug on it. While it was a double-blind study, it wasn't hard to figure out who was getting O2 vs. air...kids who were completely immobile were walking and talking. My roomate was a student shadow and her student was in this trial, but on the placebo. Parents had to pay through the nose to go have it done in another province privately. So yes, there are sometimes cures that people don't know about because the pharma companies go out of their way to discredit and bash them so that people mistrust. My first question to myself is usually, can it hurt to try? If there's riskm, then yes, I'd be weary, but if it's something that wouldn't harm me regardless, bring it on. Laura You can easily judge the character of a man by how he treats those who can do nothing for him. -James D. Miles- http://www.bananga.com ...empowering ourselves! On Practical-Homeschooling: 10 Free or Inexpensive Homeschool Options http://www.practical-homeschooling.org On 17/04/2010 11:53 AM, Grace M. wrote: Hello Sue, I've looked at the website and it appears to be just another snake oil cure. If there were
Re: [TMIC] QUESTION ON LARNETON
My first question to myself is usually, can it hurt to try? If there's risk, then yes, I'd be wary, but if it's something that wouldn't harm me regardless, bring it on. What's most interesting about this is that every pharma I've been prescribed has risks () The last one i got rid of, Oxy-B, was found to affect short term memory. --
Re: [TMIC] Question on meds
Have never taken it. Janice From: Patricia Cooley Sent: Monday, February 01, 2010 2:13 PM To: tmic-list@eskimo.com Subject: [TMIC] Question on meds I have a good friend that has severe neuropathy in her feet, which I also suffer from. Mine is no where as bad. Her doctor put her on Amitriptyline which has helped per pain quite a bit. Before I ask my neuro about it, I was wondering if any of you have any experience with it. When I looked it up on the internet, there are a lot of side effects, and it seems I always suffer from them. I would appreciate any info you can give me. Patti - Wisconsin
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Really, Jeanne? What did you have to promise to be offered such things!?!?!?! Janice From: jrushton Sent: Sunday, November 29, 2009 10:09 AM To: Kevin Wolfthal ; tmic Subject: Re: [TMIC] Question Hey, but I've been offered all sorts of things from the UK as in all sorts of big money and a girlfriend or boyfriend... Yikes j ---Original Message--- From: Kevin Wolfthal Date: 11/28/2009 10:35:25 PM To: alle...@aol.com; tmic-list@eskimo.com Subject: Re: [TMIC] Question Thanks all. I would never order drugs overseas. The whole thing sounds like an oddball scheme. Kevin J92-331623.jpg
RE: [TMIC] Question
KEVIN BE CAREFUL. I ORDERED A DRUG FROM OVERSEAS WHEN I WAS DIAGNOISED WITH TM. IT DID A NUMBER ON MY LIVER. AS SOON AS I DISCONTINUED IT MY LIVER ENZYMES WENT BACK TO NORMAL. FORTUNATELY, THEY REFUNDED ALL MY MONEY BACK. PATTI - WISCONSIN From: alle...@aol.com [mailto:alle...@aol.com] Sent: Saturday, November 28, 2009 7:58 PM To: tmic-list@eskimo.com Subject: Re: [TMIC] Question In a message dated 11/28/2009 7:04:39 P.M. Eastern Standard Time, wolft...@optonline.net writes: I'm mainly wondering about the APLS/APS as I've never heard of them, and the Tramadol. Make sense to anyone? I don't know Kevin but before you do anything, I would ask my doctor and I would not order the drugs from overseas..Ella
Re: [TMIC] Question
Patti, I've ordered drugs before from overseas...heck, I lived overseas for 6 years and they have better drugs than here. Anyhow, I'm sure that if you had tried the US version of the same drug, you would have has the same effect. The problem isn't ordering drugs from overseas, it's from ordering drugs that your doctor hasn't prescribed for you. I'm on an anti-depressant not available here (available in the rest of the world). My doctor supports my taking it because that's the one my psychiatrist in the Middle East...who is Canadian, put me on and it worked better than anything they trialed me with here...so I order it in with their full support. Laura On 29/11/2009 9:20 AM, Patricia Cooley wrote: KEVIN BE CAREFUL. I ORDERED A DRUG FROM OVERSEAS WHEN I WAS DIAGNOISED WITH TM. IT DID A NUMBER ON MY LIVER. AS SOON AS I DISCONTINUED IT MY LIVER ENZYMES WENT BACK TO NORMAL. FORTUNATELY, THEY REFUNDED ALL MY MONEY BACK. PATTI - WISCONSIN *From:* alle...@aol.com [mailto:alle...@aol.com] *Sent:* Saturday, November 28, 2009 7:58 PM *To:* tmic-list@eskimo.com *Subject:* Re: [TMIC] Question In a message dated 11/28/2009 7:04:39 P.M. Eastern Standard Time, wolft...@optonline.net writes: I'm mainly wondering about the APLS/APS as I've never heard of them, and the Tramadol. Make sense to anyone? I don't know Kevin but before you do anything, I would ask my doctor and I would not order the drugs from overseas..Ella
Re: [TMIC] Question
Hey, but I've been offered all sorts of things from the UK as in all sorts of big money and a girlfriend or boyfriend... Yikes j ---Original Message--- From: Kevin Wolfthal Date: 11/28/2009 10:35:25 PM To: alle...@aol.com; tmic-list@eskimo.com Subject: Re: [TMIC] Question Thanks all. I would never order drugs overseas. The whole thing sounds like an oddball scheme. Kevin J92-331623.jpg
Re: [TMIC] Question
In a message dated 11/28/2009 7:04:39 P.M. Eastern Standard Time, wolft...@optonline.net writes: I'm mainly wondering about the APLS/APS as I've never heard of them, and the Tramadol. Make sense to anyone? I don't know Kevin but before you do anything, I would ask my doctor and I would not order the drugs from overseas..Ella
Re: [TMIC] Question
Thanks all. I would never order drugs overseas. The whole thing sounds like an oddball scheme. Kevin
Re: [TMIC] Question
Have been using tramadol for years. It does not take away the pain but does dull it some. Have no trouble getting tramadol in the states. Ann in Virginia -Original Message- From: Kevin Wolfthal wolft...@optonline.net To: tmic-list@eskimo.com Sent: Sat, Nov 28, 2009 7:04 pm Subject: [TMIC] Question Someone sent me this email. Does it make sense to anyone? Transverse myelitis ... Transverse myelitis Have you considered the following: TM is usually caused by Antiphospholipid Syndrome /Hughes Syndrome (also known as APLS APS). If it is you may find relief in the other treatments for it. Second, have you gone to a Pain Management doctor? For years I was never informed of such but for Neurologists. Not all Neuros are also Pain Management. They will run diagnostics and properly treat the pain. Otherwise, you can order overseas through a trusted pharmacy I've used for years at http://www.yasminpharmacy.com/ and look for Tramadol. Its not considered a controlled substance and its legal. If the site is down, keep trying. The bandwidth gets used up easily and it is shopping season. Its all legal. :) I hope something here helps. I do have APLS so I dread the potential. I will pray for you. :o) Cheers! I'm mainly wondering about the APLS/APS as I've never heard of them, and the Tramadol. Make sense to anyone? Kevin
Re: [TMIC] question
It is something we all have to live with; something we al l have to work out with pain and suffering. Lol. When my bowel is full, I can't empty my bladder either! Learned a long time ago what Dr. Kerr meant by digital disimpaction! I find mineral oil, one Tbs., taken orally along with prunes every other day works nicely. F
Re: [TMIC] question
Hey Kevin, Just think about the extra weight you're caring around when you're constipated. LOL Also, remember that it's help to drink a lot of water and to be able to do standing exercises. I understand this is harder for most of us, but any exercises is better than none. I have found that any exercises with the legs even in a chair and even better if you able to stand up does help with a good bowel movement. May we'll feel better today, Todd in CC, TX --- On Sun, 8/9/09, Kevin Wolfthal wolft...@optonline.net wrote: From: Kevin Wolfthal wolft...@optonline.net Subject: [TMIC] question To: tmic-list@eskimo.com Date: Sunday, August 9, 2009, 4:16 PM Has anyone ever noticed that constipation, or not moving your bowels regularly for any reason, can make other symptoms worse, such as spasms? Kevin
RE: [TMIC] question
I had trouble with the bowl, after 6 month TM. Went in the hospital for a week, I was complete filled up, and to less came out. After It was done, I was put on Lactulose, every day use. The spasme went much better. I still am on use of Lactolose, it has been 12 years now. Wim Date: Sun, 9 Aug 2009 17:16:01 -0400 From: wolft...@optonline.net To: tmic-list@eskimo.com Subject: [TMIC] question Has anyone ever noticed that constipation, or not moving your bowels regularly for any reason, can make other symptoms worse, such as spasms? Kevin _ Nieuws, entertainment en de laatste roddels. Je vind het op MSN.nl! http://nl.msn.com/
Re: [TMIC] question
Have a pain all the time on my right side. When I become constipated the pain becomes much worse and goes all the way up to my shoulder Ann in Virginia -Original Message- From: Kevin Wolfthal wolft...@optonline.net To: tmic-list@eskimo.com Sent: Sun, Aug 9, 2009 5:16 pm Subject: [TMIC] question Has anyone ever noticed that constipation, or not moving? your bowels regularly for any reason, can make other symptoms? worse, such as spasms?? ? Kevin? ?
Re: [TMIC] question
Janice I eat ice...when I am having a flash I drink the Pepsi then eat the ice..all this while I am drenched with sweat and I plop down in front of the fan..it is a wonderful feeling isn't it!? Debi ---Original Message--- From: Janice Date: 8/9/2009 8:50:37 PM To: Janet Dunn; 'Kevin Wolfthal'; tmic-list@eskimo.com Subject: Re: [TMIC] question Janet, Do you also have problems with just sitting in your air-conditioned room, doing nothing, and all of a sudden you can feel yourself getting uncomfortably warm? Or with some activity - like making a bed - and you start dripping with sweat?I live in Missouri and the summers are really hot, the winters really cold - but it doesn't really matter. I still get hit with this. My doc says there is not a lot that can be done without causing other problems.I wear a patch on my arm - clonidine - and that is about all they can do for me, but it doesn't do much good.I just have to quit whatever I am doing, sit down and drink something cold.After a while, I get better.I'm a mess! Janice - Original Message - From: Janet Dunn j.d...@shaw.ca To: 'Kevin Wolfthal' wolft...@optonline.net; tmic-list@eskimo.com Sent: Sunday, August 09, 2009 7:38 PM Subject: RE: [TMIC] question Yes, I have noticed that. It also makes the bladder issues worse. Glad I am not alone in this. I also, being a person from a northern climate, do not know how you down in the warmth stand the heat. Too much heat and my burning bands drive me nuts. Too much cold and I have trouble walking. Maybe I need to be in a bubble. Janet -Original Message- From: Kevin Wolfthal [mailto:wolft...@optonline.net] Sent: August 9, 2009 2:16 PM To: tmic-list@eskimo.com Subject: [TMIC] question Has anyone ever noticed that constipation, or not moving your bowels regularly for any reason, can make other symptoms worse, such as spasms? Kevin Spiral_notebook.jpg
Re: [TMIC] question
Hi, Ann, I don't know about the pain but I do know that when you become constipated and your stool stays in your bowel, your body will absorb the fluids which makes the stool even harder and more uncomfortable and more difficult to extract. Having the TM aggravates the issue with all of our nerve problems especially for those of us who have no feeling in that area. Each one of us has to find our own answer to the constipation problem or we will continue suffering. It's not healthy to have that stuff stay in our system, either. Not fun, is it? Jeanne ---Original Message--- From: anndil...@aol.com Date: 8/10/2009 4:48:59 PM To: wolft...@optonline.net; tmic-list@eskimo.com Subject: Re: [TMIC] question Have a pain all the time on my right side. When I become constipated the pain becomes much worse and goes all the way up to my shoulder Ann in Virginia -Original Message- From: Kevin Wolfthal wolft...@optonline.net To: tmic-list@eskimo.com Sent: Sun, Aug 9, 2009 5:16 pm Subject: [TMIC] question Has anyone ever noticed that constipation, or not moving your bowels regularly for any reason, can make other symptoms worse, such as spasms? Kevin 01_tile.jpg01_side.gif
Re: [TMIC] question
I teach high school and have pains n my side and other places - do those count? Pardon the humor. --Original Message-- From: anndil...@aol.com To: wolft...@optonline.net To: tmic-list@eskimo.com Subject: Re: [TMIC] question Sent: Aug 10, 2009 5:48 PM Have a pain all the time on my right side. When I become constipated the pain becomes much worse and goes all the way up to my shoulder Ann in Virginia -Original Message- From: Kevin Wolfthal wolft...@optonline.net To: tmic-list@eskimo.com Sent: Sun, Aug 9, 2009 5:16 pm Subject: [TMIC] question Has anyone ever noticed that constipation, or not moving your bowels regularly for any reason, can make other symptoms worse, such as spasms? Kevin Sent from my Verizon Wireless BlackBerry
Re: [TMIC] question
I am right there with you! I am amazed how everything effects everything... I get terrible shooting pains down my legs when I am constipated!! Prunes, prunes and more prunes. :) Blessings! Trudy On Mon, Aug 10, 2009 at 6:14 PM, rj_ran...@yahoo.com wrote: I teach high school and have pains n my side and other places - do those count? Pardon the humor. --Original Message-- From: anndil...@aol.com To: wolft...@optonline.net To: tmic-list@eskimo.com Subject: Re: [TMIC] question Sent: Aug 10, 2009 5:48 PM Have a pain all the time on my right side. When I become constipated the pain becomes much worse and goes all the way up to my shoulder Ann in Virginia -Original Message- From: Kevin Wolfthal wolft...@optonline.net To: tmic-list@eskimo.com Sent: Sun, Aug 9, 2009 5:16 pm Subject: [TMIC] question Has anyone ever noticed that constipation, or not moving your bowels regularly for any reason, can make other symptoms worse, such as spasms? Kevin Sent from my Verizon Wireless BlackBerry -- Everything is possible for one who believes, still more for one who hopes, even more for one who loves
Re: [TMIC] question
Funny how when you are a nurse you can talk about things like this as if you are talking about the weather! ::)) ---Original Message--- From: Trudy Ogilvie Date: 8/10/2009 9:07:04 PM To: rj_ran...@yahoo.com Cc: anndil...@aol.com; wolft...@optonline.net; tmic-list@eskimo.com Subject: Re: [TMIC] question I am right there with you! I am amazed how everything effects everything... I get terrible shooting pains down my legs when I am constipated!! Prunes, prunes and more prunes. :) Blessings! Trudy On Mon, Aug 10, 2009 at 6:14 PM, rj_ran...@yahoo.com wrote: I teach high school and have pains n my side and other places - do those count? Pardon the humor. --Original Message-- From: anndil...@aol.com To: wolft...@optonline.net To: tmic-list@eskimo.com Subject: Re: [TMIC] question Sent: Aug 10, 2009 5:48 PM Have a pain all the time on my right side. When I become constipated the pain becomes much worse and goes all the way up to my shoulder Ann in Virginia -Original Message- From: Kevin Wolfthal wolft...@optonline.net To: tmic-list@eskimo.com Sent: Sun, Aug 9, 2009 5:16 pm Subject: [TMIC] question Has anyone ever noticed that constipation, or not moving your bowels regularly for any reason, can make other symptoms worse, such as spasms? Kevin Sent from my Verizon Wireless BlackBerry -- Everything is possible for one who believes, still more for one who hopes, even more for one who loves 01_tile.jpg01_side.gif
Re: [TMIC] question
It is something we all have to live with; something we all have to work out with pain and suffering. Lol. When my bowel is full, I can't empty my bladder either! Learned a long time ago what Dr. Kerr meant by digital disimpaction! Cora in Ok Sent from my BlackBerry® wireless handheld -Original Message- From: jrushton jrush...@columbiaenergyllc.com Date: Tue, 11 Aug 2009 07:30:04 To: Trudy Ogilviemother...@gmail.com; tmictmic-list@eskimo.com Subject: Re: [TMIC] question Funny how when you are a nurse you can talk about things like this as if you are talking about the weather! ::)) ---Original Message--- From: Trudy Ogilvie Date: 8/10/2009 9:07:04 PM To: rj_ran...@yahoo.com Cc: anndil...@aol.com; wolft...@optonline.net; tmic-list@eskimo.com Subject: Re: [TMIC] question I am right there with you! I am amazed how everything effects everything... I get terrible shooting pains down my legs when I am constipated!! Prunes, prunes and more prunes. :) Blessings! Trudy On Mon, Aug 10, 2009 at 6:14 PM, rj_ran...@yahoo.com wrote: I teach high school and have pains n my side and other places - do those count? Pardon the humor. --Original Message-- From: anndil...@aol.com To: wolft...@optonline.net To: tmic-list@eskimo.com Subject: Re: [TMIC] question Sent: Aug 10, 2009 5:48 PM Have a pain all the time on my right side. When I become constipated the pain becomes much worse and goes all the way up to my shoulder Ann in Virginia -Original Message- From: Kevin Wolfthal wolft...@optonline.net To: tmic-list@eskimo.com Sent: Sun, Aug 9, 2009 5:16 pm Subject: [TMIC] question Has anyone ever noticed that constipation, or not moving your bowels regularly for any reason, can make other symptoms worse, such as spasms? Kevin Sent from my Verizon Wireless BlackBerry -- Everything is possible for one who believes, still more for one who hopes, even more for one who loves 01_side.gif
Re: [TMIC] question
Janet, I also have fatigue. I thought it was just my body not getting stronger to be back to normal yet. But, after hearing you guys talk about it, I figured out I must have it too. If I am fairly busy in the morning, I can count on needing to sit with my legs up for a good portion of the afternoon. Also, the band you are talking about just under the breast. I complained to my doc about that and he said it was spasms. What he told me to do was stretch my body as far as I could get myself straight and even leaning backwards. You need to stretch out that sharp pain. It does help me, but jeepers I hate that pain. Janice - Original Message - From: Janet Dunn To: 'jrushton' ; 'tmic' Sent: Monday, August 10, 2009 12:13 AM Subject: RE: [TMIC] question Hey Jeanne When you say that the pain starts worsening at T4 (which is where mine is) and you know the rest is coming, what do you mean by that? I am finding lately that the fatigue is awful. I spent yesterday morning garage saleing, and then the afternoon was naptime. Today, I could hardly drag my butt out of bed, and I did a little yard work this afternoon, and then back to bed. The band is like a jagged razor blade, under my breast. I just get so tired, and so sore. That is what frustrates me. And yes, the constant work at keeping the plumbing working. Yikes that makes me crazy. One thing changes in your routine, and you are down for the count for days. Enough of that. Janet
Re: [TMIC] question
Kevin, I hear you about keeping the house cool.In the winter and sometimes in the summer with the AC on, our friends know to grab the afgfans for warmth. Janice - Original Message - From: Kevin Wolfthal wolft...@optonline.net To: Janet Dunn j.d...@shaw.ca; tmic-list@eskimo.com Sent: Sunday, August 09, 2009 11:47 PM Subject: Re: [TMIC] question Janet, Thank you and everyone who answered this. TM has to be one of the oddest afflictions there is. I also can't take extremes of heat or cold. I even have to turn on my AC in the winter if it's too hot in my room. Wierd. Kevin Janet Dunn wrote: Yes, I have noticed that. It also makes the bladder issues worse. Glad I am not alone in this. I also, being a person from a northern climate, do not know how you down in the warmth stand the heat. Too much heat and my burning bands drive me nuts. Too much cold and I have trouble walking. Maybe I need to be in a bubble. Janet -Original Message- From: Kevin Wolfthal [mailto:wolft...@optonline.net] Sent: August 9, 2009 2:16 PM To: tmic-list@eskimo.com Subject: [TMIC] question Has anyone ever noticed that constipation, or not moving your bowels regularly for any reason, can make other symptoms worse, such as spasms? Kevin
Re: [TMIC] question
Jeanne, That is the way the body heat hits me too. I absolutely hate it!!I can't be in a room without the fans going too. What a mess! Janice - Original Message - From: jrushton To: Kevin Wolfthal ; tmic Sent: Monday, August 10, 2009 10:30 AM Subject: Re: [TMIC] question Kevin, I think the only thing we can do is just literally treat the symptoms and we have many I will break out in a sweat from above the spinal cord injury where water will just fall off of my face. I think it's past 'sweating' but nothing at all below the T4 level where the TM got me!!! What a study we could be!! Jeanne ---Original Message--- From: Kevin Wolfthal Date: 8/9/2009 11:47:41 PM To: Janet Dunn; tmic-list@eskimo.com Subject: Re: [TMIC] question Janet, Thank you and everyone who answered this. TM has to be one of the oddest afflictions there is. I also can't take extremes of heat or cold. I even have to turn on my AC in the winter if it's too hot in my room. Wierd. Kevin Janet Dunn wrote: Yes, I have noticed that. It also makes the bladder issues worse. Glad I am not alone in this. I also, being a person from a northern climate, do not know how you down in the warmth stand the heat. Too much heat and my burning bands drive me nuts. Too much cold and I have trouble walking. Maybe I need to be in a bubble. Janet -Original Message- From: Kevin Wolfthal [mailto:wolft...@optonline.net] Sent: August 9, 2009 2:16 PM To: tmic-list@eskimo.com Subject: [TMIC] question Has anyone ever noticed that constipation, or not moving your bowels regularly for any reason, can make other symptoms worse, such as spasms? Kevin 01_side.gif01_tile.jpg
Re: [TMIC] question
I hate this hot feeling so much - do you realize how many baths and shampoo's I take in a week's time?I am so looking forward to fall and winter. I really seem to do better then. I also suck on those frozen koolaid sticks that kids like in the summer. I sit in front of a fan with it! Love it.It really does help me. Janice - Original Message - From: bradebi To: Janet Dunn ; 'Kevin Wolfthal' ; tmic-list@eskimo.com ; Janice Sent: Monday, August 10, 2009 4:58 PM Subject: Re: [TMIC] question Janice I eat ice...when I am having a flash I drink the Pepsi then eat the ice..all this while I am drenched with sweat and I plop down in front of the fan..it is a wonderful feeling isn't it!? Debi ---Original Message--- From: Janice Date: 8/9/2009 8:50:37 PM To: Janet Dunn; 'Kevin Wolfthal'; tmic-list@eskimo.com Subject: Re: [TMIC] question Janet, Do you also have problems with just sitting in your air-conditioned room, doing nothing, and all of a sudden you can feel yourself getting uncomfortably warm? Or with some activity - like making a bed - and you start dripping with sweat?I live in Missouri and the summers are really hot, the winters really cold - but it doesn't really matter. I still get hit with this. My doc says there is not a lot that can be done without causing other problems.I wear a patch on my arm - clonidine - and that is about all they can do for me, but it doesn't do much good.I just have to quit whatever I am doing, sit down and drink something cold.After a while, I get better.I'm a mess! Janice - Original Message - From: Janet Dunn j.d...@shaw.ca To: 'Kevin Wolfthal' wolft...@optonline.net; tmic-list@eskimo.com Sent: Sunday, August 09, 2009 7:38 PM Subject: RE: [TMIC] question Yes, I have noticed that. It also makes the bladder issues worse. Glad I am not alone in this. I also, being a person from a northern climate, do not know how you down in the warmth stand the heat. Too much heat and my burning bands drive me nuts. Too much cold and I have trouble walking. Maybe I need to be in a bubble. Janet -Original Message- From: Kevin Wolfthal [mailto:wolft...@optonline.net] Sent: August 9, 2009 2:16 PM To: tmic-list@eskimo.com Subject: [TMIC] question Has anyone ever noticed that constipation, or not moving your bowels regularly for any reason, can make other symptoms worse, such as spasms? Kevin Spiral_notebook.jpg
Re: [TMIC] question
By all means, all pain counts and we all seem to have it in different places! I worked in the nurse's office in one of our high schools for 19 years.I loved it - every day was completely different. What do you teach? Janice - Original Message - From: rj_ran...@yahoo.com To: anndil...@aol.com; wolft...@optonline.net; tmic-list@eskimo.com Sent: Monday, August 10, 2009 5:14 PM Subject: Re: [TMIC] question I teach high school and have pains n my side and other places - do those count? Pardon the humor. --Original Message-- From: anndil...@aol.com To: wolft...@optonline.net To: tmic-list@eskimo.com Subject: Re: [TMIC] question Sent: Aug 10, 2009 5:48 PM Have a pain all the time on my right side. When I become constipated the pain becomes much worse and goes all the way up to my shoulder Ann in Virginia -Original Message- From: Kevin Wolfthal wolft...@optonline.net To: tmic-list@eskimo.com Sent: Sun, Aug 9, 2009 5:16 pm Subject: [TMIC] question Has anyone ever noticed that constipation, or not moving your bowels regularly for any reason, can make other symptoms worse, such as spasms? Kevin Sent from my Verizon Wireless BlackBerry
Re: [TMIC] question
I think being around doc's so much and having a great group like this that you can talk to about anything, makes it so much easier to talk about. No matter what the subject is! Janice - Original Message - From: jrushton To: Trudy Ogilvie ; tmic Sent: Tuesday, August 11, 2009 7:30 AM Subject: Re: [TMIC] question Funny how when you are a nurse you can talk about things like this as if you are talking about the weather! ::)) ---Original Message--- From: Trudy Ogilvie Date: 8/10/2009 9:07:04 PM To: rj_ran...@yahoo.com Cc: anndil...@aol.com; wolft...@optonline.net; tmic-list@eskimo.com Subject: Re: [TMIC] question I am right there with you! I am amazed how everything effects everything... I get terrible shooting pains down my legs when I am constipated!! Prunes, prunes and more prunes. :) Blessings! Trudy On Mon, Aug 10, 2009 at 6:14 PM, rj_ran...@yahoo.com wrote: I teach high school and have pains n my side and other places - do those count? Pardon the humor. --Original Message-- From: anndil...@aol.com To: wolft...@optonline.net To: tmic-list@eskimo.com Subject: Re: [TMIC] question Sent: Aug 10, 2009 5:48 PM Have a pain all the time on my right side. When I become constipated the pain becomes much worse and goes all the way up to my shoulder Ann in Virginia -Original Message- From: Kevin Wolfthal wolft...@optonline.net To: tmic-list@eskimo.com Sent: Sun, Aug 9, 2009 5:16 pm Subject: [TMIC] question Has anyone ever noticed that constipation, or not moving your bowels regularly for any reason, can make other symptoms worse, such as spasms? Kevin Sent from my Verizon Wireless BlackBerry -- Everything is possible for one who believes, still more for one who hopes, even more for one who loves 01_side.gif01_tile.jpg
Re: [TMIC] question
Hi Kevin, The short answer is yes. For me, any kind of pressure inside the colon, e.g., being empty, having gas, constipation, etc., flares up all my neuropathic problems from that area down into the legs and feet. It's difficult to keep everything stable. Regards. Louise - Original Message - From: Kevin Wolfthal wolft...@optonline.net To: tmic-list@eskimo.com Sent: Sunday, August 09, 2009 5:16 PM Subject: [TMIC] question Has anyone ever noticed that constipation, or not moving your bowels regularly for any reason, can make other symptoms worse, such as spasms? Kevin
Re: [TMIC] question
Janet, Thank you and everyone who answered this. TM has to be one of the oddest afflictions there is. I also can't take extremes of heat or cold. I even have to turn on my AC in the winter if it's too hot in my room. Wierd. Kevin Janet Dunn wrote: Yes, I have noticed that. It also makes the bladder issues worse. Glad I am not alone in this. I also, being a person from a northern climate, do not know how you down in the warmth stand the heat. Too much heat and my burning bands drive me nuts. Too much cold and I have trouble walking. Maybe I need to be in a bubble. Janet -Original Message- From: Kevin Wolfthal [mailto:wolft...@optonline.net] Sent: August 9, 2009 2:16 PM To: tmic-list@eskimo.com Subject: [TMIC] question Has anyone ever noticed that constipation, or not moving your bowels regularly for any reason, can make other symptoms worse, such as spasms? Kevin
RE: [TMIC] question
Hey Jeanne When you say that the pain starts worsening at T4 (which is where mine is) and you know the rest is coming, what do you mean by that? I am finding lately that the fatigue is awful. I spent yesterday morning garage saleing, and then the afternoon was naptime. Today, I could hardly drag my butt out of bed, and I did a little yard work this afternoon, and then back to bed. The band is like a jagged razor blade, under my breast. I just get so tired, and so sore. That is what frustrates me. And yes, the constant work at keeping the plumbing working. Yikes that makes me crazy. One thing changes in your routine, and you are down for the count for days. Enough of that. Janet
RE: [TMIC] question
When the band starts to hurt and you described it very well, I know that the pain is going to get worse from my breast line on down. It feels like a steel wire just getting tighter and tighter. It hurts so bad and then the pain intensifies from there on down. I usually add Tylenol or Ibuprofen to what I'm already taking to take the edge off but it just makes my whole body drag. It makes me tired just to breathe!! You explained it perfectly. I just don't know what triggers it other than the weather. It does help to do my water therapy in the hot tub, tho. Quite a job, having this TM, isn't it??!! :) ---Original Message--- From: Janet Dunn Date: 8/10/2009 12:13:11 AM To: 'jrushton'; 'tmic' Subject: RE: [TMIC] question Hey Jeanne When you say that the pain starts worsening at T4 (which is where mine is) and you know the rest is coming, what do you mean by that? I am finding lately that the fatigue is awful. I spent yesterday morning garage saleing, and then the afternoon was naptime. Today, I could hardly drag my butt out of bed, and I did a little yard work this afternoon, and then back to bed. The band is like a jagged razor blade, under my breast. I just get so tired, and so sore. That is what frustrates me. And yes, the constant work at keeping the plumbing working. Yikes that makes me crazy. One thing changes in your routine, and you are down for the count for days. Enough of that. Janet 01_tile.jpg01_side.gif
Re: [TMIC] question
Kevin, I think the only thing we can do is just literally treat the symptoms and we have many I will break out in a sweat from above the spinal cord injury where water will just fall off of my face. I think it's past 'sweating' but nothing at all below the T4 level where the TM got me!!! What a study we could be!! Jeanne ---Original Message--- From: Kevin Wolfthal Date: 8/9/2009 11:47:41 PM To: Janet Dunn; tmic-list@eskimo.com Subject: Re: [TMIC] question Janet, Thank you and everyone who answered this. TM has to be one of the oddest afflictions there is. I also can't take extremes of heat or cold. I even have to turn on my AC in the winter if it's too hot in my room. Wierd. Kevin Janet Dunn wrote: Yes, I have noticed that. It also makes the bladder issues worse. Glad I am not alone in this. I also, being a person from a northern climate, do not know how you down in the warmth stand the heat. Too much heat and my burning bands drive me nuts. Too much cold and I have trouble walking. Maybe I need to be in a bubble. Janet -Original Message- From: Kevin Wolfthal [mailto:wolft...@optonline.net] Sent: August 9, 2009 2:16 PM To: tmic-list@eskimo.com Subject: [TMIC] question Has anyone ever noticed that constipation, or not moving your bowels regularly for any reason, can make other symptoms worse, such as spasms? Kevin 01_tile.jpg01_side.gif
Re: [TMIC] Question for people on Lyrica?
Okay it looks like I got some answers to my question. It now seems that I need to drink alcohol with my lyrica to get rid of my anger. It also looks like I have to time my beer, wine or scotch as well as my lyrica. Well doing this I will have to avoid walls, floors and toilet rings. It will also give me amnesia and send me into lala land so I won't know I am angry. ROTFLMNAO (rolling on the floor laughing my NUMB ass off) Thank you to those who answered because it has given me a great laugh. I spoke with my doctor and we decided since I was going to be lessening my lyrica gradually that we are hoping the anger will dissipates. I think the anger is more due to the fact that I let myself catch that darn virus which threw me back into a TM bout. I have never been on a anti depressant and I don't know how I feel about starting one as normally I am able to handle the little bouts of depression I get with my TM. I really am afraid of adding more medication to the mix as since going on lyrica I have been able to get rid of most other medication and just keep a few on hand for break through pain sensations when I need it. Thank you again all.. sometimes I wonder where I would be if I did not have a life full of laughter. Kathy
Re: [TMIC] Question for people on Lyrica?
Kathy, I would never have made it in life without laughter and mainly at my self! When TM hit, I made my friends and family promise that we would all get thru the process laughing and teasing me thru the more awkward processes such as the pottie issues which there were many and occasionally still are a few! There are time when the tears are needed, also. They are just as important as the laughter.. They are a cleansing of the soul. One thing the neuro told me in ICU was that an antidepressant was very important because of having to go thru all of the issues of being paralyzed and the changes I would have to go thru with my life. I was taking a very good, low dose one for PMS so I wouldn't have the urge to maim anyone once a month and it worked perfectly so I continued it. There is no shame in it. It is like having to take any other med when our body does not work like it is supposed to and there are so many out there that you sometimes have to find one that works just for you. Dang, once I start yakking, I just can't seem to quit Hugs, Jeanne ---Original Message--- From: LadyOwl1961 Date: 6/19/2009 9:16:35 AM To: tmic-list@eskimo.com Subject: Re: [TMIC] Question for people on Lyrica? Okay it looks like I got some answers to my question. It now seems that I need to drink alcohol with my lyrica to get rid of my anger. It also looks like I have to time my beer, wine or scotch as well as my lyrica. Well doing this I will have to avoid walls, floors and toilet rings. It will also give me amnesia and send me into lala land so I wont know I am angry. ROTFLMNAO (rolling on the floor laughing my NUMB ass off) Thank you to those who answered because it has given me a great laugh. I spoke with my doctor and we decided since I was going to be lessening my lyrica gradually that we are hoping the anger will dissipates. I think the anger is more due to the fact that I let myself catch that darn virus which threw me back into a TM bout. I have never been on a anti depressant and I dont know how I feel about starting one as normally I am able to handle the little bouts of depression I get with my TM. I really am afraid of adding more medication to the mix as since going on lyrica I have been able to get rid of most other medication and just keep a few on hand for break through pain sensations when I need it. Thank you again all.. sometimes I wonder where I would be if I did not have a life full of laughter. Kathy final.gif
RE: [TMIC] Question for people on Lyrica?
I too have been on Lyrica for quite a few yearsh.. so that means that you WERE all with me last week at Rehoboth Beach, Delaware! I rarely drink liquor - but weren't those Margaritas fantastic!!! Yup 5 days of just the ladies eight of us, partying, shopping, sunning!! I am a beer/wine person.I have weaned myself off of Cymbalta... but not much chance of weaning off Amstel light or Pinot Grigio!! Not EVERY day (well almost not every day!) but I do enjoy my cold beer and wine! Besides since Feb. 7th 2002 I always walk as if I've had a few!!I definitely need a walker/cane to get around...It's TGIFwatch out for those walls or floors. been there done that!Blessings!Trudy Sunday I head up to New York for a week of visiting friends and family!! I'm sure I'll see you there too! :) From: k...@frontiernet.net To: tmic-list@eskimo.com Subject: Re: [TMIC] Question for people on Lyrica? Date: Fri, 19 Jun 2009 09:16:33 -0500 Okay it looks like I got some answers to my question. It now seems that I need to drink alcohol with my lyrica to get rid of my anger. It also looks like I have to time my beer, wine or scotch as well as my lyrica. Well doing this I will have to avoid walls, floors and toilet rings. It will also give me amnesia and send me into lala land so I won’t know I am angry. ROTFLMNAO (rolling on the floor laughing my NUMB ass off) Thank you to those who answered because it has given me a great laugh. I spoke with my doctor and we decided since I was going to be lessening my lyrica gradually that we are hoping the anger will dissipates. I think the anger is more due to the fact that I let myself catch that darn virus which threw me back into a TM bout. I have never been on a anti depressant and I don’t know how I feel about starting one as normally I am able to handle the little bouts of depression I get with my TM. I really am afraid of adding more medication to the mix as since going on lyrica I have been able to get rid of most other medication and just keep a few on hand for break through pain sensations when I need it. Thank you again all.. sometimes I wonder where I would be if I did not have a life full of laughter. Kathy _ Insert movie times and more without leaving Hotmail®. http://windowslive.com/Tutorial/Hotmail/QuickAdd?ocid=TXT_TAGLM_WL_HM_Tutorial_QuickAdd_062009
Re: [TMIC] Question for people on Lyrica?
Cody, Alcohol may cause amnesia- not remembering events after consuming the alcohol. Good Luck F
Re: [TMIC] Question for people on Lyrica?
Haha. Now that's funny! True true - still funny. It can also prevent u from being able to tell the difference between the wall and the floor! (don't ask). Unfortunately, a demylenating brain stem can too - but there aren't any funny stories to tell your friends later. --Original Message-- From: fr...@franksheldon.com To: Cody To: TMIC To: Robert Pall Subject: Re: [TMIC] Question for people on Lyrica? Sent: Jun 18, 2009 8:33 AM Cody, Alcohol may cause amnesia- not remembering events after consuming the alcohol. Good Luck F Sent from my Verizon Wireless BlackBerry
Re: [TMIC] Question for people on Lyrica?
It can also prevent u from being able to tell the difference between the wall and the floor! (don't ask). That is also very true. A lot depends on how much you drink and if the walls are made of floor boards. pH
Re: [TMIC] Question for people on Lyrica?
H...it also can make one become very up close and personal with the toilet ring(don't ask on that one, either) Jeanne ---Original Message--- From: rj_ran...@yahoo.com Date: 6/18/2009 9:13:15 AM To: fr...@franksheldon.com; Cody; TMIC; Robert Pall Subject: Re: [TMIC] Question for people on Lyrica? Haha. Now that's funny! True true - still funny. It can also prevent u from being able to tell the difference between the wall and the floor! (don't ask). Unfortunately, a demylenating brain stem can too - but there aren't any funny stories to tell your friends later. --Original Message-- From: fr...@franksheldon.com To: Cody To: TMIC To: Robert Pall Subject: Re: [TMIC] Question for people on Lyrica? Sent: Jun 18, 2009 8:33 AM Cody, Alcohol may cause amnesia- not remembering events after consuming the alcohol. Good Luck F Sent from my Verizon Wireless BlackBerry tile12.jpg
RE: [TMIC] Question for people on Lyrica?
I also take Lyrica and once in awhile I will have a glass of wine or a beer but I try not to take it close to the time I take the med. I have never had an issue with it but am very careful about the timing. Jeanne ---Original Message--- From: Janet Dunn Date: 6/17/2009 8:05:39 PM To: 'Cody'; 'TMIC' Subject: RE: [TMIC] Question for people on Lyrica? OH Cody How you have made my day. And all this time I have denied myself the pleasure of a tall cold one. God Bless Ya, I am a happy camper to hear this news. Janet TIAD but Ive got today to get through. From: Cody [mailto:c...@austin.rr.com] Sent: June 17, 2009 4:41 PM To: TMIC; Robert Pall Subject: Re: [TMIC] Question for people on Lyrica? RobertI specifically ask my new pain management doctor about this subject. I ask because my wife always gets after me when I want a scotch and reminds me of the Lyrica warning label. I am on the same dosge as you 150mg 3XD and Baclofen as well. He said no problem with a beer, a scotch or a glass of wine. He just said be careful and not overdo and absolutely don't drive. He also said the warning labels are written by lawyers and not by doctors or pharmacist. He said the caution on the warning labels are appropriate but there is a certain element of CYA for the drug company built in as well. I never have over two drinks and most of the time only one and not every day either. So that's my 2 cents worth for the day as I sip my glass of Pinot..Cody in Austin E-mail message checked by Spyware Doctor (6.0.1.441) Database version: 6.12630 http://www.pctools.com/spyware-doctor-antivirus/ tile12.jpg
Re: [TMIC] Question for people on Lyrica?
That is the way I am about taking Baclofen.Having a drink on top of that can put you in la la land!! janice - Original Message - From: jrushton To: Janet Dunn ; tmic Sent: Thursday, June 18, 2009 6:22 PM Subject: RE: [TMIC] Question for people on Lyrica? I also take Lyrica and once in awhile I will have a glass of wine or a beer but I try not to take it close to the time I take the med. I have never had an issue with it but am very careful about the timing. Jeanne ---Original Message--- From: Janet Dunn Date: 6/17/2009 8:05:39 PM To: 'Cody'; 'TMIC' Subject: RE: [TMIC] Question for people on Lyrica? OH Cody How you have made my day. And all this time I have denied myself the pleasure of a tall cold one. God Bless Ya, I am a happy camper to hear this news. Janet TIAD but I've got today to get through. From: Cody [mailto:c...@austin.rr.com] Sent: June 17, 2009 4:41 PM To: TMIC; Robert Pall Subject: Re: [TMIC] Question for people on Lyrica? RobertI specifically ask my new pain management doctor about this subject. I ask because my wife always gets after me when I want a scotch and reminds me of the Lyrica warning label. I am on the same dosge as you 150mg 3XD and Baclofen as well. He said no problem with a beer, a scotch or a glass of wine. He just said be careful and not overdo and absolutely don't drive. He also said the warning labels are written by lawyers and not by doctors or pharmacist. He said the caution on the warning labels are appropriate but there is a certain element of CYA for the drug company built in as well. I never have over two drinks and most of the time only one and not every day either. So that's my 2 cents worth for the day as I sip my glass of Pinot..Cody in Austin E-mail message checked by Spyware Doctor (6.0.1.441) Database version: 6.12630 http://www.pctools.com/spyware-doctor-antivirus/ tile12.jpg
Re: [TMIC] Question for people on Lyrica?
Oh My!! I am learning all kinds of tidbits on my TM friends!! Janice - Original Message - From: jrushton To: rj_ran...@yahoo.com ; tmic Sent: Thursday, June 18, 2009 5:53 PM Subject: Re: [TMIC] Question for people on Lyrica? H...it also can make one become very up close and personal with the toilet ring(don't ask on that one, either) Jeanne ---Original Message--- From: rj_ran...@yahoo.com Date: 6/18/2009 9:13:15 AM To: fr...@franksheldon.com; Cody; TMIC; Robert Pall Subject: Re: [TMIC] Question for people on Lyrica? Haha. Now that's funny! True true - still funny. It can also prevent u from being able to tell the difference between the wall and the floor! (don't ask). Unfortunately, a demylenating brain stem can too - but there aren't any funny stories to tell your friends later. --Original Message-- From: fr...@franksheldon.com To: Cody To: TMIC To: Robert Pall Subject: Re: [TMIC] Question for people on Lyrica? Sent: Jun 18, 2009 8:33 AM Cody, Alcohol may cause amnesia- not remembering events after consuming the alcohol. Good Luck F Sent from my Verizon Wireless BlackBerry tile12.jpg
RE: [TMIC] Question for people on Lyrica?
I have been on Lyrica for at least 3 years...I started with 2 pills a day (150mg each) and 2 years ago I increased it to 3 pills or 450 mg per day. I have had TM for 12 years and have found Lyrica to be the best drug as for helping the banding,numbness and pins and needles. The only side effects are they increase my appetite and you can not drink alcohol when you are taking Lyrica (I still have a beer or two..but no hard liquor). Rob in New Jersey From: LadyOwl1961 [mailto:k...@frontiernet.net] Sent: Wednesday, June 17, 2009 12:49 PM To: tmic-list@eskimo.com Subject: [TMIC] Question for people on Lyrica? On May 6th of this year I was visiting friends in Thunder Bay, Ontario, Canada (where I am originally from and lived until 1999) when both myself and the friend I was staying with got a very bad chest cold that lasted 2 ½ weeks. It was actually longer but just the tired run down feeling lingered. I visited my family doctor in Thunder Bay on May 11th to have my prescriptions updated and refilled when during all of this and he reminded me about my TM symptoms flaring up after a very bad flu/cold as this seemed to be the trigger in my 1st. and 2nd bouts. I returned home to the States on May 25th. It was about June 1st. that I woke up at home and it was like every symptom of my TM was in over drive. With no health care and not knowing what else to do I called my doctor in Thunder Bay. He then talked to my neurologist himself and called me back telling me that they agreed I should increase my Lyrica gradually then decrease it again over the course of 2 months as my bouts seem to last approximately 3 weeks. I am in the middle of doing all of this right now. My question is that I am wondering about the increase and decrease and if you noticed any change in your moods? Lately for some unknown reason I am angry. Angry at any and everything and the least little thing can set me off (sorry for the read receipt thing). I am trying to figure out if this is due to the lyrica (a side effect is depression) or just my emotions over having another bout? Thanks Kathy (who now feels bad about her read receipt email)
Re: [TMIC] Question for people on Lyrica?
RobertI specifically ask my new pain management doctor about this subject. I ask because my wife always gets after me when I want a scotch and reminds me of the Lyrica warning label. I am on the same dosge as you 150mg 3XD and Baclofen as well. He said no problem with a beer, a scotch or a glass of wine. He just said be careful and not overdo and absolutely don't drive. He also said the warning labels are written by lawyers and not by doctors or pharmacist. He said the caution on the warning labels are appropriate but there is a certain element of CYA for the drug company built in as well. I never have over two drinks and most of the time only one and not every day either. So that's my 2 cents worth for the day as I sip my glass of Pinot..Cody in Austin - Original Message - From: Robert Pall To: LadyOwl1961 ; tmic-list@eskimo.com Sent: Wednesday, June 17, 2009 12:58 PM Subject: RE: [TMIC] Question for people on Lyrica? I have been on Lyrica for at least 3 years...I started with 2 pills a day (150mg each) and 2 years ago I increased it to 3 pills or 450 mg per day. I have had TM for 12 years and have found Lyrica to be the best drug as for helping the banding,numbness and pins and needles. The only side effects are they increase my appetite and you can not drink alcohol when you are taking Lyrica (I still have a beer or two..but no hard liquor). Rob in New Jersey -- From: LadyOwl1961 [mailto:k...@frontiernet.net] Sent: Wednesday, June 17, 2009 12:49 PM To: tmic-list@eskimo.com Subject: [TMIC] Question for people on Lyrica? On May 6th of this year I was visiting friends in Thunder Bay, Ontario, Canada (where I am originally from and lived until 1999) when both myself and the friend I was staying with got a very bad chest cold that lasted 2 ½ weeks. It was actually longer but just the tired run down feeling lingered. I visited my family doctor in Thunder Bay on May 11th to have my prescriptions updated and refilled when during all of this and he reminded me about my TM symptoms flaring up after a very bad flu/cold as this seemed to be the trigger in my 1st. and 2nd bouts. I returned home to the States on May 25th. It was about June 1st. that I woke up at home and it was like every symptom of my TM was in over drive. With no health care and not knowing what else to do I called my doctor in Thunder Bay. He then talked to my neurologist himself and called me back telling me that they agreed I should increase my Lyrica gradually then decrease it again over the course of 2 months as my bouts seem to last approximately 3 weeks. I am in the middle of doing all of this right now. My question is that I am wondering about the increase and decrease and if you noticed any change in your moods? Lately for some unknown reason I am angry. Angry at any and everything and the least little thing can set me off (sorry for the read receipt thing). I am trying to figure out if this is due to the lyrica (a side effect is depression) or just my emotions over having another bout? Thanks Kathy (who now feels bad about her read receipt email)
RE: [TMIC] Question for people on Lyrica?
OH Cody How you have made my day. And all this time I have denied myself the pleasure of a tall cold one. God Bless Ya, I am a happy camper to hear this news. Janet TIAD but I've got today to get through. From: Cody [mailto:c...@austin.rr.com] Sent: June 17, 2009 4:41 PM To: TMIC; Robert Pall Subject: Re: [TMIC] Question for people on Lyrica? RobertI specifically ask my new pain management doctor about this subject. I ask because my wife always gets after me when I want a scotch and reminds me of the Lyrica warning label. I am on the same dosge as you 150mg 3XD and Baclofen as well. He said no problem with a beer, a scotch or a glass of wine. He just said be careful and not overdo and absolutely don't drive. He also said the warning labels are written by lawyers and not by doctors or pharmacist. He said the caution on the warning labels are appropriate but there is a certain element of CYA for the drug company built in as well. I never have over two drinks and most of the time only one and not every day either. So that's my 2 cents worth for the day as I sip my glass of Pinot..Cody in Austin E-mail message checked by Spyware Doctor (6.0.1.441) Database version: 6.12630 http://www.pctools.com/en/spyware-doctor-antivirus/
Re: [TMIC] Question?
yes, you need serious antibiotics immediately. this is much more serious than a bladder infection, and if you don't bomb it immediately your kidneys can be damaged. I know. Go right now to the dr. today. Quoting CANDIS KALLEY cakal...@embarqmail.com: Never have had a kidney infection, I'm wondering if I have one now. I've got a HORRIBLE backache on the left side just above my hip bone and it's tender to the touch; I break out sweating for no reason - running 99.8 which is a fever for me; I've lost my bladder control, what little I had - I go to the bathroom, wash my hands or walk just a few steps and the urine just starts flowing. I'm also much more tired than usual. Can anyone give me a clue? Candy K.
Re: [TMIC] Question?
My daughter gets urinary overflow incontinence when she has a UTI, to date she has not had a bladder infection but if I am not mistaken it depends how long the infections sit there On Mon, Dec 29, 2008 at 12:43 PM, CANDIS KALLEY cakal...@embarqmail.comwrote: Never have had a kidney infection, I'm wondering if I have one now. I've got a HORRIBLE backache on the left side just above my hip bone and it's tender to the touch; I break out sweating for no reason - running 99.8 which is a fever for me; I've lost my bladder control, what little I had - I go to the bathroom, wash my hands or walk just a few steps and the urine just starts flowing. I'm also much more tired than usual. Can anyone give me a clue? Candy K. -- Mary Anne Egan The Stettler Group, Inc. mae...@thestettlergroup.com (908) 806-3001 (908) 806-3113 Fax
RE: [TMIC] Question?
Yes, I agree. It sounds like a kidney infection and you need to see your doctor or an urgent care clinic right away. The sooner you get on antibiotics the better. You don't want to damage your kidneys. Patti in Wisconsin -Original Message- From: westg...@interlog.com [mailto:westg...@interlog.com] Sent: Monday, December 29, 2008 11:52 AM To: CANDIS KALLEY; tmic-list@eskimo.com Subject: Re: [TMIC] Question? yes, you need serious antibiotics immediately. this is much more serious than a bladder infection, and if you don't bomb it immediately your kidneys can be damaged. I know. Go right now to the dr. today. Quoting CANDIS KALLEY cakal...@embarqmail.com: Never have had a kidney infection, I'm wondering if I have one now. I've got a HORRIBLE backache on the left side just above my hip bone and it's tender to the touch; I break out sweating for no reason - running 99.8 which is a fever for me; I've lost my bladder control, what little I had - I go to the bathroom, wash my hands or walk just a few steps and the urine just starts flowing. I'm also much more tired than usual. Can anyone give me a clue? Candy K.
Re: [TMIC] Question from Randy
Hello Bernie It has been ages since we have heard from you. What has been going on in your life? You always have such interesting stories to tell and new ideas you say we ought to try. What is the big idea about Solu-Medrol? What kind of positive effects do get from it? Isn't is comparable to a dose-pack? How bad is the pain on the fourth day? I figure that it must be worth it. God Bless, Jude In a message dated 11/12/2008 2:26:12 P.M. Eastern Standard Time, [EMAIL PROTECTED] writes: Diagnosed with TM in 2002, MS in 2008. But I was getting it before the MS diagnosis. Last time I got it was 9/08, due next month. The sick effect goes away completely in a week, then I feel better. Overall, I don't know if it does anything, but it is supposed to reduce inflammation in my spinal cord and nerve myelin, and therefore prevent damage. Bernie -Original Message- From: [EMAIL PROTECTED] [mailto:[EMAIL PROTECTED] Sent: Wednesday, November 12, 2008 1:55 PM To: Butcher; Butcher, Bernard G (NY80); Jenna; TMIC Subject: Re: RE: [TMIC] Question from Randy Yes, I get this infusion every 3 months, 1G/day for 3 days. It's prednisone. For me, I get a bit sick after the fourth day, but my neuro says that that is not the norm - just me. After that I feel pretty good, stronger. Bernie, That'sa lot of medication!! For what disease do you get that much Solu-Medro?? Have you started to get the side effects? Good Luck F **Get the Moviefone Toolbar. Showtimes, theaters, movie news more!(http://pr.atwola.com/promoclk/10075x1212774565x1200812037/aol?redir=htt p://toolbar.aol.com/moviefone/download.html?ncid=emlcntusdown0001)
Re: [TMIC] Question from Randy-Solu-Medrol
Jude, Most of the time when they give you Solu-Medrol for MS or TM you get 1000mgs a day. The dose pac's are much lower dose of steroids. I have such bad reactions to it that I had to be put in the hospital each time I needed it. Instead of doing 1000mg once a day, they have to spread it out and do 250mg every 6 hours. It makes me very sick and I spend 6 days in the hospital. Then come home for a day or two and then go back for a day, because my blood sugar is so messed up and has problems readjusting. Spend a day and get things settled down. I am always very sick for two weeks following the Solu-Medrol. It takes 9 weeks or so before I really start feeling good again. Durning all this time I can't drive and spend most of the time in bed. And am very grouchy Thank goodness I have not had to that for almost 3 years now. I am so very blessed and happy about that. I have a friend here that did the Solu-Medrol for the first time and was asking me if I ever had a relaps again would I do the steroids again. And I told her as bad as it is on my body, yes I would because it did help so much. As Frank said in an e-mail there are some bad permanet side effects. It is something you really need to talk about with your Dr. Jenna From: [EMAIL PROTECTED] [EMAIL PROTECTED] To: [EMAIL PROTECTED]; TMIC-LIST@eskimo.com Sent: Friday, November 14, 2008 3:39:05 AM Subject: Re: [TMIC] Question from Randy AOL Email Hello Bernie It has been ages since we have heard from you. What has been going on in your life? You always have such interesting stories to tell and new ideas you say we ought to try. What is the big idea about Solu-Medrol? What kind of positive effects do get from it? Isn't is comparable to a dose-pack? How bad is the pain on the fourth day? I figure that it must be worth it. God Bless, Jude In a message dated 11/12/2008 2:26:12 P.M. Eastern Standard Time, [EMAIL PROTECTED] writes: Diagnosed with TM in 2002, MS in 2008. But I was getting it before the MS diagnosis. Last time I got it was 9/08, due next month. The sick effect goes away completely in a week, then I feel better. Overall, I don't know if it does anything, but it is supposed to reduce inflammation in my spinal cord and nerve myelin, and therefore prevent damage. Bernie -Original Message- From: [EMAIL PROTECTED] [mailto:[EMAIL PROTECTED] Sent: Wednesday, November 12, 2008 1:55 PM To: Butcher; Butcher, Bernard G (NY80); Jenna; TMIC Subject: Re: RE: [TMIC] Question from Randy Yes, I get this infusion every 3 months, 1G/day for 3 days. It's prednisone. For me, I get a bit sick after the fourth day, but my neuro says that that is not the norm - just me. After that I feel pretty good, stronger. Bernie, That'sa lot of medication!! For what disease do you get that much Solu-Medro?? Have you started to get the side effects? Good Luck F Get the Moviefone Toolbar. Showtimes, theaters, movie news more!
RE: [TMIC] Question from Randy
Hi Jude - Great to hear from you - hope pray you are better. I have posted from time to time, but I don't know if I always get through. My life (with Mr. MS) now is: get up, go to work (using walker), come home (totally exhausted) eat, then bed, do it all again. On weekends, rest up as much as possible for next week. The positive effects are that I feel better for a while, a month or two, then after 3 months get another dose. I also do it because my neuro recommends it (?) I think it's worth it. Plus up until now, I get it done at home. What's a dose pack? After the fourth day, I have no pain really, just ill, like, flu-ish - I take two naps per day for two or three days, then I begin to come back to normal Bernie From: [EMAIL PROTECTED] [mailto:[EMAIL PROTECTED] Sent: Friday, November 14, 2008 3:39 AM To: Butcher, Bernard G (NY80); TMIC-LIST@eskimo.com Subject: Re: [TMIC] Question from Randy Hello Bernie It has been ages since we have heard from you. What has been going on in your life? You always have such interesting stories to tell and new ideas you say we ought to try. What is the big idea about Solu-Medrol? What kind of positive effects do get from it? Isn't is comparable to a dose-pack? How bad is the pain on the fourth day? I figure that it must be worth it. God Bless, Jude In a message dated 11/12/2008 2:26:12 P.M. Eastern Standard Time, [EMAIL PROTECTED] writes: Diagnosed with TM in 2002, MS in 2008. But I was getting it before the MS diagnosis. Last time I got it was 9/08, due next month. The sick effect goes away completely in a week, then I feel better. Overall, I don't know if it does anything, but it is supposed to reduce inflammation in my spinal cord and nerve myelin, and therefore prevent damage. Bernie -Original Message- From: [EMAIL PROTECTED] [mailto:[EMAIL PROTECTED] Sent: Wednesday, November 12, 2008 1:55 PM To: Butcher; Butcher, Bernard G (NY80); Jenna; TMIC Subject: Re: RE: [TMIC] Question from Randy Yes, I get this infusion every 3 months, 1G/day for 3 days. It's prednisone. For me, I get a bit sick after the fourth day, but my neuro says that that is not the norm - just me. After that I feel pretty good, stronger. Bernie, That'sa lot of medication!! For what disease do you get that much Solu-Medro?? Have you started to get the side effects? Good Luck F Get the Moviefone Toolbar http://pr.atwola.com/promoclk/10075x1212774565x1200812037/aol?redir =http://toolbar.aol.com/moviefone/download.html?ncid=emlcntusdown000 1 . Showtimes, theaters, movie news more!
RE: [TMIC] Question from Randy-Solu-Medrol
Hi Jenna - yes it is bad for your body - I took a bone density scan test flunked - now I have osteo penia. Bernie From: Jenna [mailto:[EMAIL PROTECTED] Sent: Friday, November 14, 2008 8:47 AM To: [EMAIL PROTECTED]; Butcher, Bernard G (NY80); TMIC-LIST@eskimo.com Subject: Re: [TMIC] Question from Randy-Solu-Medrol Jude, Most of the time when they give you Solu-Medrol for MS or TM you get 1000mgs a day. The dose pac's are much lower dose of steroids. I have such bad reactions to it that I had to be put in the hospital each time I needed it. Instead of doing 1000mg once a day, they have to spread it out and do 250mg every 6 hours. It makes me very sick and I spend 6 days in the hospital. Then come home for a day or two and then go back for a day, because my blood sugar is so messed up and has problems readjusting. Spend a day and get things settled down. I am always very sick for two weeks following the Solu-Medrol. It takes 9 weeks or so before I really start feeling good again. Durning all this time I can't drive and spend most of the time in bed. And am very grouchy http://mail.yimg.com/a/i/mesg/tsmileys2/02.gif Thank goodness I have not had to that for almost 3 years now. I am so very blessed and happy about that. I have a friend here that did the Solu-Medrol for the first time and was asking me if I ever had a relaps again would I do the steroids again. And I told her as bad as it is on my body, yes I would because it did help so much. As Frank said in an e-mail there are some bad permanet side effects. It is something you really need to talk about with your Dr. Jenna From: [EMAIL PROTECTED] [EMAIL PROTECTED] To: [EMAIL PROTECTED]; TMIC-LIST@eskimo.com Sent: Friday, November 14, 2008 3:39:05 AM Subject: Re: [TMIC] Question from Randy Hello Bernie It has been ages since we have heard from you. What has been going on in your life? You always have such interesting stories to tell and new ideas you say we ought to try. What is the big idea about Solu-Medrol? What kind of positive effects do get from it? Isn't is comparable to a dose-pack? How bad is the pain on the fourth day? I figure that it must be worth it. God Bless, Jude In a message dated 11/12/2008 2:26:12 P.M. Eastern Standard Time, [EMAIL PROTECTED] writes: Diagnosed with TM in 2002, MS in 2008. But I was getting it before the MS diagnosis. Last time I got it was 9/08, due next month. The sick effect goes away completely in a week, then I feel better. Overall, I don't know if it does anything, but it is supposed to reduce inflammation in my spinal cord and nerve myelin, and therefore prevent damage. Bernie -Original Message- From: [EMAIL PROTECTED] [mailto:[EMAIL PROTECTED] Sent: Wednesday, November 12, 2008 1:55 PM To: Butcher; Butcher, Bernard G (NY80); Jenna; TMIC Subject: Re: RE: [TMIC] Question from Randy Yes, I get this infusion every 3 months, 1G/day for 3 days. It's prednisone. For me, I get a bit sick after the fourth day, but my neuro says that that is not the norm - just me. After that I feel pretty good, stronger. Bernie, That'sa lot of medication!! For what disease do you get that much Solu-Medro?? Have you started to get the side effects? Good Luck F Get the Moviefone Toolbar http://pr.atwola.com/promoclk/10075x1212774565x1200812037/aol?redir =http://toolbar.aol.com/moviefone/download.html?ncid=emlcntusdown000 1 . Showtimes, theaters, movie news more!
RE: [TMIC] Question from Randy
Yes, I get this infusion every 3 months, 1G/day for 3 days. It's prednisone. For me, I get a bit sick after the fourth day, but my neuro says that that is not the norm - just me. After that I feel pretty good, stronger. Bernie From: Jenna [mailto:[EMAIL PROTECTED] Sent: Wednesday, November 12, 2008 1:19 PM To: TMIC; Kim; Martha Fleming; Betty Subject: [TMIC] Question from Randy Randy asked me to forward this. Anyone what to tell him their experience with Solu-Medrol? Jenna [EMAIL PROTECTED] Ok u might forward this to group. I have no forward ability on blackberry. They are treating me with IV methyprnisolone (solu-medrol) and added tergetal for the facial pain. Could someone look up, explain or add personal experiences from the methyprnisolone. Sent from my Verizon Wireless BlackBerry From: Jenna [EMAIL PROTECTED] Date: Wed, 12 Nov 2008 05:39:18 -0800 (PST) To: [EMAIL PROTECTED] Subject: Re: October TM meeting Very good Randy! Hopefully the new ENT will have good news too! Take care and keep me updated. Jenna From: [EMAIL PROTECTED] [EMAIL PROTECTED] To: Jenna [EMAIL PROTECTED] Sent: Wednesday, November 12, 2008 9:01:11 AM Subject: Re: October TM meeting Great news the doc says that it isn't ms. The facial nerves are inflamed but the brain stem is ok. Theyu don't knw the cause but believe it is an ear infection that attacked the nervous system. But it isn't a nuro problem per say. The steriods seem to be working. They also have a better ENT going to look at me. They say that I will probably have to have surgery on inner ear. But that is left up to the ENT. Sent from my Verizon Wireless BlackBerry From: Jenna [EMAIL PROTECTED] Date: Tue, 11 Nov 2008 15:56:05 -0800 (PST) To: [EMAIL PROTECTED] Subject: Re: October TM meeting Wow what a day. Well I am praying for you and hoping you will recover quickly. Jenna From: [EMAIL PROTECTED] [EMAIL PROTECTED] To: Jenna [EMAIL PROTECTED] Sent: Tuesday, November 11, 2008 7:43:57 PM Subject: Re: October TM meeting I had two lumbar punctures. The first got nothing. The second was not much better and the guy hit a nerve TWICE that sent a shock to my testees. It was horrific. They did some evoke potential tests where they electricute ur hands and ankles. I had another mri. They did some visual and auditory tests. Sent from my Verizon Wireless BlackBerry From: Jenna [EMAIL PROTECTED] Date: Tue, 11 Nov 2008 15:36:30 -0800 (PST) To: [EMAIL PROTECTED] Subject: Re: October TM meeting How are you feeling? What are they doing for you?? Jenna From: [EMAIL PROTECTED] [EMAIL PROTECTED] To: Jenna [EMAIL PROTECTED] Sent: Tuesday, November 11, 2008 7:33:59 PM Subject: Re: October TM meeting Sunday is best for me. I should b out. I thnk the girls said sunday. Sent from my Verizon Wireless BlackBerry From: Jenna [EMAIL PROTECTED] Date: Tue, 11 Nov 2008 15:28:19 -0800 (PST) To: [EMAIL PROTECTED]; Susan[EMAIL PROTECTED]; [EMAIL PROTECTED] CC: Martha Fleming[EMAIL PROTECTED]; Betty Budnek[EMAIL PROTECTED]; RANDY RANKIN[EMAIL PROTECTED] Subject: Re: October TM meeting I can meet on Saturday or Sunday just let me know. Jenna From: [EMAIL PROTECTED] [EMAIL PROTECTED] To: Jenna [EMAIL PROTECTED]; Susan [EMAIL PROTECTED]; [EMAIL PROTECTED] Cc: Martha Fleming [EMAIL PROTECTED]; Betty Budnek [EMAIL PROTECTED]; RANDY RANKIN [EMAIL PROTECTED] Sent: Tuesday, November 11, 2008 6:12:21 PM Subject: Re: October TM meeting R we going to meet this weekend??? -- Original message from Jenna [EMAIL PROTECTED]: -- When and where are we meeting. Sunday is fine with me so that Randy can be there. Please let me know. Thanks so much!! Have a great week all. Jenna From: [EMAIL PROTECTED] [EMAIL PROTECTED] To: Susan [EMAIL PROTECTED]; [EMAIL PROTECTED] Cc: Martha Fleming [EMAIL PROTECTED]; Betty Budnek [EMAIL PROTECTED]; Jenna [EMAIL PROTECTED]; RANDY RANKIN [EMAIL PROTECTED] Sent: Sunday, November 9, 2008 7:40:53 PM Subject: Re: October TM meeting Maybe we can find something between Hiram and D'ville? -- Original message from Martha Fleming [EMAIL PROTECTED]: -- Okay. Sounds good to me. --- On Wed, 11/5/08, [EMAIL PROTECTED] [EMAIL PROTECTED] wrote: From: [EMAIL PROTECTED] [EMAIL PROTECTED] Subject: Re: October TM meeting To: [EMAIL PROTECTED] Cc: Martha Fleming [EMAIL PROTECTED], Betty Budnek [EMAIL PROTECTED] Date: Wednesday, November 5, 2008, 7:56 PM With Thanksgiving comming up, next weekend might
Re: RE: [TMIC] Question from Randy
Yes, I get this infusion every 3 months, 1G/day for 3 days. It's prednisone. For me, I get a bit sick after the fourth day, but my neuro says that that is not the norm - just me. After that I feel pretty good, stronger. Bernie, That'sa lot of medication!! For what disease do you get that much Solu-Medro?? Have you started to get the side effects? Good Luck F
RE: RE: [TMIC] Question from Randy
Diagnosed with TM in 2002, MS in 2008. But I was getting it before the MS diagnosis. Last time I got it was 9/08, due next month. The sick effect goes away completely in a week, then I feel better. Overall, I don't know if it does anything, but it is supposed to reduce inflammation in my spinal cord and nerve myelin, and therefore prevent damage. Bernie -Original Message- From: [EMAIL PROTECTED] [mailto:[EMAIL PROTECTED] Sent: Wednesday, November 12, 2008 1:55 PM To: Butcher; Butcher, Bernard G (NY80); Jenna; TMIC Subject: Re: RE: [TMIC] Question from Randy Yes, I get this infusion every 3 months, 1G/day for 3 days. It's prednisone. For me, I get a bit sick after the fourth day, but my neuro says that that is not the norm - just me. After that I feel pretty good, stronger. Bernie, That'sa lot of medication!! For what disease do you get that much Solu-Medro?? Have you started to get the side effects? Good Luck F
Re: [TMIC] question about post
I think that is a wonderful idea Jeanne... kind of no different than when someone puts something like NWS for Not Work Safe when they are sending something not appropriate to be viewed or read while at work. Thanxx for the idea.. Kevin From: jrushton [EMAIL PROTECTED] To: Jenna [EMAIL PROTECTED]; tmic tmic-list@eskimo.com Sent: Monday, October 27, 2008 7:30:13 PM Subject: Re: [TMIC] question about post I have a simple suggestion after all of the discussion on religion and politics...maybe too simple? What if we were to add 'Rel' or 'Poll' to the Subject line whenever we want to add either and that way it will give the reader a chance to delete it without having to read it first?? I'm fine without it but it might help keep peace for all and I mean that in a good way. Jeanne in Dayton
Re: [TMIC] question about post
Hi, Gilly, I think I've been part of the TMIC and when I first came on, there was a spirited discussion of some kind then but because there was so much caring between those involved, I watched caring hearts work it out so it is like a family. Things come up?? We work it out!!! j
Re: [TMIC] question about post
Yep, that is exactly how it is! For the fairly new to the list family, you should know that in general, the old Timers who stay on the list to help are those who have not had a full recovery, so, like you, we are suffering. Those who have stayed only for a short time, are usually those who have had a most significant recovery. We stay, we post in good faith and in the spirit of a close family who care for each other but don't always agree. hugs Gilly - Original Message - From: jrushton To: Gillian Clark ; tmic Sent: Wednesday, October 29, 2008 9:30 AM Subject: Re: [TMIC] question about post Hi, Gilly, I think I've been part of the TMIC and when I first came on, there was a spirited discussion of some kind then but because there was so much caring between those involved, I watched caring hearts work it out so it is like a family. Things come up?? We work it out!!! j
Re: [TMIC] question about post
I have a simple suggestion after all of the discussion on religion and politics...maybe too simple? What if we were to add 'Rel' or 'Poll' to the Subject line whenever we want to add either and that way it will give the reader a chance to delete it without having to read it first?? I'm fine without it but it might help keep peace for all and I mean that in a good way. Jeanne in Dayton
Re: [TMIC] question about post
Jenna, as far as I'm concerned, how else are we going to know about some that are unable to let us know themselves? I'm thankful we have people like you that are willing to help each other. Isn't that what the TMIC site is all about?? Helping each other?? I thank you for being so kind as to do this act for someone.. Jeanne in Dayton
Re: [TMIC] question about post
I personally believe in prayer and its healing and comforting abilities. Requesting prayers and praying for one another is the humanly response. We all may not believe in the name of who/what we call our higher power, but I do believe in a higher power which I call GOD. I vote for anyone requesting prayers, directly or thru other members, should be allowed. Those who do not believe in a higher power do not have to participate. Life is short! Break the rules! Forgive quickly! Kiss slowly! Love truly, Laugh uncontrollably . And never regret anything that made you smile. Prayers and thoughts for you and yours, Candy K. - Original Message - From: Jenna [EMAIL PROTECTED] To: TMIC tmic-list@eskimo.com Sent: Sunday, October 26, 2008 1:48:10 PM (GMT-0500) America/Bogota Subject: [TMIC] question about post OK I have a question. Is it still OK to post information about people from the list that are to sick to post and/or are in the hospital? And some of them are asking for prayer and thoughts. I have updates from people on the list but now I am not sure if that bugs people too?? Just not wanting to make any mistakes or make anyone mad. Jenna
Re: [TMIC] question about post
I'm not against requests for prayers,I requested them over 9 yrs ago when my
first great grandson was born weighing 2 lbs1 oz.
I'm talking about the other religious emails.I'm drawing a blank on how to
explain what I mean;could someone else please explain it for me?
Thank,Cheryl
--- On Sun, 10/26/08, CANDIS KALLEY [EMAIL PROTECTED] wrote:
From: CANDIS KALLEY [EMAIL PROTECTED]
Subject: Re: [TMIC] question about post
To: TMIC tmic-list@eskimo.com
Cc: Jenna [EMAIL PROTECTED]
Date: Sunday, October 26, 2008, 3:03 PM
#yiv963255076 {font-family:'Times New Roman';font-size:12pt;color:#00;}
I personally believe in prayer and its healing and comforting abilities.
Requesting prayers and praying for one another is the humanly response. We all
may not believe in the name of who/what we call our higher power, but I do
believe in a higher power which I call GOD.
I vote for anyone requesting prayers, directly or thru other members, should be
allowed. Those who do not believe in a higher power do not have to
participate.
Life is short! Break the rules! Forgive quickly! Kiss slowly!
Love truly, Laugh uncontrollably .
And never regret anything that made you smile.
Prayers and thoughts for you and yours,
Candy K.
- Original Message -
From: Jenna [EMAIL PROTECTED]
To: TMIC tmic-list@eskimo.com
Sent: Sunday, October 26, 2008 1:48:10 PM (GMT-0500) America/Bogota
Subject: [TMIC] question about post
OK I have a question. Is it still OK to post information about people from the
list that are to sick to post and/or are in the hospital? And some of them are
asking for prayer and thoughts. I have updates from people on the list but now
I am not sure if that bugs people too??
Just not wanting to make any mistakes or make anyone mad.
Jenna
Re: [TMIC] question about post
Hmmm. I am thinking that maybe it would be emails that try to teach religion or are meant to persuade others to your religious opinion. Just briefly asking for prayers (without getting too detailed about your beliefs) doesn't seem to be offensive to the majority here. On Sun, Oct 26, 2008 at 3:32 PM, [EMAIL PROTECTED] [EMAIL PROTECTED]wrote: I'm not against requests for prayers,I requested them over 9 yrs ago when my first great grandson was born weighing 2 lbs1 oz. I'm talking about the other religious emails.I'm drawing a blank on how to explain what I mean;could someone else please explain it for me? Thank,Cheryl --- On *Sun, 10/26/08, CANDIS KALLEY [EMAIL PROTECTED]* wrote: From: CANDIS KALLEY [EMAIL PROTECTED] Subject: Re: [TMIC] question about post To: TMIC tmic-list@eskimo.com Cc: Jenna [EMAIL PROTECTED] Date: Sunday, October 26, 2008, 3:03 PM I personally believe in prayer and its healing and comforting abilities. Requesting prayers and praying for one another is the humanly response. We all may not believe in the name of who/what we call our higher power, but I do believe in a higher power which I call GOD. I vote for anyone requesting prayers, directly or thru other members, should be allowed. Those who do not believe in a higher power do not have to participate. Life is short! Break the rules! Forgive quickly! Kiss slowly! Love truly, Laugh uncontrollably . And never regret anything that made you smile. Prayers and thoughts for you and yours, Candy K. - Original Message - From: Jenna [EMAIL PROTECTED] To: TMIC tmic-list@eskimo.com Sent: Sunday, October 26, 2008 1:48:10 PM (GMT-0500) America/Bogota Subject: [TMIC] question about post OK I have a question. Is it still OK to post information about people from the list that are to sick to post and/or are in the hospital? And some of them are asking for prayer and thoughts. I have updates from people on the list but now I am not sure if that bugs people too?? Just not wanting to make any mistakes or make anyone mad. Jenna
Re: [TMIC] question
Hi Pat, Sorry you've had to become a member of this family, but you've come to the right place for help (and love)! I'm aware of Sjogrern's as a good friend of mine also has it. As you know, Sjogren's (like tm) is an immune system problem which is frequently the case, you have one immune problem and that puts you at greater risk for another which is not unusual in this group .my immune problem is excema and my dernatologist has tried to put me on Imuranmy system wouldn't allow me to take it.I was still teaching at the elementary level at that time so I was very aware of the increased possibility that I was more likely to pick up things from my kids..my doc told me to keep the children at arms length from me as much as possible and to wash my hands frequently! During that time I had no problems except rejecting the Imuran. I am aware that there are some of the tm folks who use the immune suppressants, so surely you'll get more definitive responses than mine...just choose your activities carefully, crowds, etc...the second time we tried Imuran, I chose to not go to events or places where I knew there would be more opportunities to catch something..same results, the only problem was my body rejecting the meds!! Anyway, I assume you'll get some responses that are more helpful than minejust know I care, and you're not alone in this fight!! janh --- On Sat, 10/18/08, Patricia Cooley [EMAIL PROTECTED] wrote: From: Patricia Cooley [EMAIL PROTECTED] Subject: [TMIC] question To: tmic-list@eskimo.com Date: Saturday, October 18, 2008, 12:32 PM Hello: I am looking for some information. I came down with TM in June. My doctors believe I have Sjogren’s Syndrome which caused the TM. They put me on a drug to suppress my immune system. I am taking the meds but I am concerned with the cold and flu season starting and I have been advised NOT to have a flu shot. Has anyone out there been on that type of drug and did you have any problems? I would appreciate any information you may have. Thanks for your help. Pat in Wisconsin
Re: [TMIC] Question - bum pain
Have you tried a mattress overlay? Do a search for Isotonic topper pad. I tried one and thought it felt great but I sunk into it so much that it was difficult for the nurse to turn me. I now use a Sierra Gel Mattress Overlay. very comfotable. The Sierra Gel Mattress Overlay incorporates a series of gel bladders encapsulated between high-density polyurethane sculptured foam and support base. This combination creates a therapeutically advanced yet cost effective support surface. Optimal environment for prevention/treatment of pressure sores. One-Piece construction requires no assembly. Easy to clean, non-shear/low friction surface. Elastic corner straps to secure overlay to mattress. Base foundation is a high-density solid one-piece foam constructed core. Convoluted high-density polyurethane foam topper. Cover material in Unitek, a soft nylon urethane coated OFX non-vapor permeable material. Bladders contain an aqueous non-toxic gel solution. Size hospital twin. Components conform to CAL TECH 117 and all infection control standards. Medicare Reimbursable Code HCPCS EO185 applies to standard size. Size: 34W x 76L x 3H In my wheelchair I use a Roho High Profile Quadtro Select Cushion. For me it works much better than the gel cushion. I'm in my wheelchair about 15 hours a day. At 02:33 PM 7/11/2008, CANDISKALLEY wrote: I'm wondering if any of you have the feeling as if your hip/pelvic bones are trying to come through your bum muscles or as if I fell on my bum and it is terribly bruised? This is the only feeling I have on my bum other than I know when my bum is touched. I had to do alot of sitting yesterday - driving to Dr. office, in the office, and drive back home. Today my bum is so sore like it is bruised. This is not the first time - it seems to happen anytime that I have to sit for long periods of time. This is the only feeling I have in bum and it really hurts! Pain pills do not help. I've laid on my sides so much that they are also hurting. I can't lay on my stomach because I have an ileostomy - my colon has been removed along with the rectum and the small intestine comes out on my left side of my lower abdomen, so laying on my stomach is out. Anyone have any suggestions? Candy K. Jim Lubin [EMAIL PROTECTED] Home Page: http://makoa.org/jim disAbility Resources: http://www.makoa.org
Re: [TMIC] Question - bum pain
Candy, you're bound to get different replies on this but I have to tell you that I suffer from bum pain - and it does feel like bruising. In my case, it is the beginning of pressure sores. They start very deep will worsen if you don't take the pressure off in some way. I bought some of the special cushions they use in wheelchairs they help a bit. I have a tendency to pressure sores everywhere. The dr explained that even though I am 'mobile', I do have residual paralysis (which I knew of course). Because of that, when there is an area(s) where the blood supply is squashed from sitting/lying/leaning , the signal to and back from the brain does not occur I don't move. Pressure sores develop. I tend to get very careful when I get the sores (open or not), then I start feeling better and I forget to move again - or I don't move at all in my sleep. I've been on this roller coaster for about 5 yrs. I'm just healing from this last painful bout. The last count when I saw the dr this Winter was 18 - 15 of them below the waist. I sleep on a row of pillows. I wrap my feet with elastic bandage before I go to bed to protect the sores on my ankles. And on, and on, and on. I am very thankful that I've never had infection in my sores but I am sick of pain. I'm looking for some kind of timer that would chime every 15 min. or so to remind me to move. I've found watches that chime but the sound is so soft, I don't hear it if the TV is on and of course, it wouldn't wake me up. There are watches with alarms but I don't want to have to re-set constantly. Anybody out there know of anything that would work? Best of luck, Candy. Be careful keep moving. - Original Message - From: CANDIS KALLEY To: tmic-list Sent: Friday, July 11, 2008 5:33 PM Subject: [TMIC] Question - bum pain I'm wondering if any of you have the feeling as if your hip/pelvic bones are trying to come through your bum muscles or as if I fell on my bum and it is terribly bruised? This is the only feeling I have on my bum other than I know when my bum is touched. I had to do alot of sitting yesterday - driving to Dr. office, in the office, and drive back home. Today my bum is so sore like it is bruised. This is not the first time - it seems to happen anytime that I have to sit for long periods of time. This is the only feeling I have in bum and it really hurts! Pain pills do not help. I've laid on my sides so much that they are also hurting. I can't lay on my stomach because I have an ileostomy - my colon has been removed along with the rectum and the small intestine comes out on my left side of my lower abdomen, so laying on my stomach is out. Anyone have any suggestions? Candy K.
Re: [TMIC] Question - bum pain
Hi Candy, I don't have much of an answer as I am in a wheelchair, but if you hurt from sitting too long, why not try a gel cushion to use when sitting. You can get one online or anywhere that sells medical supplies/equipmentElla **Get the scoop on last night's hottest shows and the live music scene in your area - Check out TourTracker.com! (http://www.tourtracker.com?NCID=aolmus0005000112)
Re: [TMIC] Question - bum pain
Forgot to add and I so agree with Michelle re taking an Advil or any kind of pain killer. If there is pain, you will remember to move more often. Diane in Canada - Original Message - From: Diane To: CANDIS KALLEY ; tmic-list Sent: Friday, July 11, 2008 6:27 PM Subject: Re: [TMIC] Question - bum pain Candy, you're bound to get different replies on this but I have to tell you that I suffer from bum pain - and it does feel like bruising. In my case, it is the beginning of pressure sores. They start very deep will worsen if you don't take the pressure off in some way. I bought some of the special cushions they use in wheelchairs they help a bit. I have a tendency to pressure sores everywhere. The dr explained that even though I am 'mobile', I do have residual paralysis (which I knew of course). Because of that, when there is an area(s) where the blood supply is squashed from sitting/lying/leaning , the signal to and back from the brain does not occur I don't move. Pressure sores develop. I tend to get very careful when I get the sores (open or not), then I start feeling better and I forget to move again - or I don't move at all in my sleep. I've been on this roller coaster for about 5 yrs. I'm just healing from this last painful bout. The last count when I saw the dr this Winter was 18 - 15 of them below the waist. I sleep on a row of pillows. I wrap my feet with elastic bandage before I go to bed to protect the sores on my ankles. And on, and on, and on. I am very thankful that I've never had infection in my sores but I am sick of pain. I'm looking for some kind of timer that would chime every 15 min. or so to remind me to move. I've found watches that chime but the sound is so soft, I don't hear it if the TV is on and of course, it wouldn't wake me up. There are watches with alarms but I don't want to have to re-set constantly. Anybody out there know of anything that would work? Best of luck, Candy. Be careful keep moving. - Original Message - From: CANDIS KALLEY To: tmic-list Sent: Friday, July 11, 2008 5:33 PM Subject: [TMIC] Question - bum pain I'm wondering if any of you have the feeling as if your hip/pelvic bones are trying to come through your bum muscles or as if I fell on my bum and it is terribly bruised? This is the only feeling I have on my bum other than I know when my bum is touched. I had to do alot of sitting yesterday - driving to Dr. office, in the office, and drive back home. Today my bum is so sore like it is bruised. This is not the first time - it seems to happen anytime that I have to sit for long periods of time. This is the only feeling I have in bum and it really hurts! Pain pills do not help. I've laid on my sides so much that they are also hurting. I can't lay on my stomach because I have an ileostomy - my colon has been removed along with the rectum and the small intestine comes out on my left side of my lower abdomen, so laying on my stomach is out. Anyone have any suggestions? Candy K.
Re: [TMIC] QUESTION
Ditto. I have not been physically ill, since my TM onset. I did not even get a flu shot this year, but I have not had a cold or flu, or any of these things since I've had TM (knock on wood). Naomi C4-incomplete, quadriplegic since July 2005 due to Transverse Myelitis **Planning your summer road trip? Check out AOL Travel Guides. (http://travel.aol.com/travel-guide/united-states?ncid=aoltrv000316)
RE: [TMIC] QUESTION
The TM made that some tissue around the spine is damaged. This damaged tissue is seen by the body as wrong element. The immune system attacs this tissue. The fact that some parts are not working or bad working is proof that the immune system is working. Thats why some people get treatments to bring the immune system to zero, in the hope that when it recoveres, the body is back to normal. At the end, I never heard proof it worked, sometimes for a short period. Fact is when I have a UTI, I have erections , while being heathy, forget it. What ever I tried. Also when I go for a pee, I can empty my bladder complete, normal I have to caterise. So when the immune system let me down at some points, parts will work. Wim from Holland Date: Wed, 2 Apr 2008 13:09:29 -0400From: [EMAIL PROTECTED]: [EMAIL PROTECTED]: [TMIC] QUESTION It is funny after having TM for more than 10 years I still don't truly understand it. Do we have weak immune systems or did we merely have an episode in which our immune system did not work properly…a one time (for many of us) thing? Rob in New Jersey _ De mooiste afbeeldingen van Angelina Jolie vind je met Live Search http://search.live.com/images/results.aspx?q=angelina%20jolieFORM=MIINTM
Re: [TMIC] QUESTION
Rob, we get so many different theories from so many doctors and neurologists The answer I've gotten more than any is that it is a one time episode(in most cases) BUT we each have to relearn so much because the lesion in our spinal cord blocks what used to run freely from our brain. We have to learn how to reroute the messages and sometimes it works...sometimes it doesn't. That is why some of us have gone from total paralysis (in my case from the chest down) to being able to walk even tho we cannot actually 'feel' plus we suffer with constant pain, spasms, and temperature sensitivity. Each one of us are so different. A lot also has to do with the degree of the 'attack . A lot also has to do with the amount of PT that we have done. So many questions, huh? It's going to be interesting to read all of the other's answers. Jeanne in Dayton where the sun is shining and looks and feels like Spring!! ---Original Message--- From: Robert Pall Date: 4/2/2008 12:09:42 PM To: tmic-list@eskimo.com Subject: [TMIC] QUESTION It is funny after having TM for more than 10 years I still don't truly understand it. Do we have weak immune systems or did we merely have an episode in which our immune system did not work properly a one time (for many of us) thing? Rob in New Jersey
